"Addison’s disease and lack of correct procedures"

Hi, I wanted to share my experience of what recently happened to me at the Queens Medical Centre, Nottingham. Sadly it’s not the first time this has happened here!

I was recently admitted after being told by my GP surgery to call 111, who then sent a fast response Ambulance to me within 20 minutes.

This part was done correctly.

I had a pulse of 130bpm and bp was on the lower side, though not majorly low at this point but I was feeling a little breathless and dizzy.

By the time I got to the hospital I was assessed by a Nurse and taken to A&E where I waited an hour or so before seeing a doctor. No steroids were given at this point despite me showing my Addisons medical card explaining what to do as soon as I come into hospital, whether in a crisis or not! Adrenal crisis is a medical emergency and delaying treatment can cause a crisis even if you’re not quite in one when your body is under stress. I even had a letter with me from my endocrine doctor.

Almost 5 hours later and no steroids were given. I didn’t have mine with me sadly. I thought I had. I was also given no fluids despite showing obvious signs of dehydration which can also lead to a crisis. They did take bloods which had come back saying my sodium was only 127 and with Addisons this is also a sign a crisis is coming and should mean immediate IV fluids really.

I finally emailed my endocrine nurse who then got the on call endo to call A&E who then got me to a ward for fluids (sodium) and a higher steroid dose. Perhaps should have been higher but hours later than I normally take my hydrocortisone, they finally gave me some hydrocortisone... this is also something you don’t do when someone is under physical stress with Addisons. You need a stress dose, let alone NO dose.

I should also point out that I am 21 weeks pregnant and I was having reduced movement at the time. In A&E a midwife did come to check on baby. This was good.

When finally on the medical ward they kept checking my BP and overnight it was very low and the same the next night too. Saturday early hours my BP was so low I was a little harder to wake and at one point it was only 75/39 but this went up to about 88 on the next check.

And at the point it was about 75/45 was when a male auxiliary nurse tilted my bed so my feet were way higher than my head. This brought my bp back up to a semi-stable level. Annoyingly and wrongly, as lovely as all the nurses were they did not record a single one of the lower BP readings and extremely high heart rates and I believe this is because it puts you on hourly observations. They did however, record the BP’s that were above 90.

So when the doctors came to see me, they thought I was fine and lying about the low BP’s!! This is not how it should be done. I needed 4 bags of IV sodium chloride and a double my normal dose of hydrocortisone and even with this and drinking lots of water, it was still a struggle to keep it up.

I also needed a commode on the worst night as I was too dizzy to walk to the toilet.

In my discharge letter the doctor has played everything that happened down as though I lied, saying I had a case of mild adrenal insufficiency and mild tachycardia as well as mild low sodium (this is actually moderate at 127). They also said that I was never dizzy or short of breath, which is not true. They also said I had a short dose of fluids but i was given them over a few days slowly. It also had no mention of the delays or the low BP’s.

This has happened on more than on occasion. They all back each other up. Luckily my experience the time before at 10 weeks pregnant when I was admitted was a much better experience.

I am concerned this keeps happening to people with Addisons all the time. Medically I can see why they may have thought it wasn’t urgent but why risk it? It could have turned at any minute and those low BP’s were a sign of it. All this time I was also not feeling my baby as much as normal. They told me I was anxious. I had a high heart rate since 10 weeks, I’m not an anxious person. Next time I am tempted to try and treat myself at home as I feel safer.

Thanks for reading.