"Lack of awareness of Addison's disease"

I was diagnosed with Addison's Disease in 2020. I remember nobody believing me.

I was feeling dizzy, no energy, dehydrated, chest pains, anorexia. My skin  very tanned and craving salt. I just put it down to maybe I had vitiligo? I never knew what Addison's Disease was.

I made appointments with my GP. Of course they didn't know anything about Addison's Disease. Luckily enough my blood test came back that I had Addison's. When I was told I was actually happy that they finally found out what was wrong after weeks of going through hell with this disease.

Since being on hydrocortisone and fludrocortisone medication, I have had several Addison's crises. Every time I've been admitted to Glan Clwyd Hospital they hardly know anything about Addison's. I recently found that they only know what's in the text books they learn off, and that's why they don't know enough about rare diseases such as Addison's, Chiari malformation, etc.

In early April I was feeling so dizzy, lightheaded, no energy, forgetful, diarrhoea and sharp abdominal pain and getting these horrible migraines like someone was stabbing the top of my head and then felt like a brain freeze.

I made an appointment with my GP and told her I've been getting sharp abdominal pain and really bad migraine on the top of my head and I also told her about the abdominal pain and the dizziness and no energy. She didn't do anything, no blood test, no investigation. She asked if I've done a covid test. I did three and they all came back negative so it's not covid, it's to do with my Addison's. She then let me go and said its nothing but a headache.

Same day my symptoms were worse. I increased my hydrocortisone and it didn't help. Looking at my phone and all the words jumbled up and I couldn't read it properly, and when I tried to write the words were all mixed up. I cried. I was so sad that I just wasn't being listened to.

After this I went really dizzy. I started shaking. I felt all clammy. When I stood up everything went grey. I called 999 and said I'm having an Addisonian crisis. At the time I didn't have my HC injection. The ambulance service said there were no ambulances due to life threatening emergencies. I just thought to myself Addison's crisis is life threatening, I could die any minute. I said okay, as not having the energy and strength to explain this is life threatening.

A couple minutes after I rang back and said my symptoms are getting worse. They got a taxi to take me to A and E. When I got there I was pale and shaking, no energy, dizzy, couldn't even stand, told the receptionist I'm having an Addison's crisis, I need my injection. The receptionist told me to sit down.

I saw the triage nurse who asked about my symptoms, which I explained. After being seen by triage I waited 11 and a half hours feeling like this and within this time shaking dizzy etc. After 11 half hours I was seen by A doctor. I explained to him what was going on. He didn't have much knowledge on Addison's himself. And said there are too many symptoms to put it down to your Addison's.

He did a BP and then examined my stomach. As he pressed down on the area where I had been getting abdominal pain I went dizzy and everything went grey. He then put me in a room and I was given HC injection and 100mg iv and HC fluids. I can't believe 11 and half hours until my hydrocortisone injection.

After having my fluids etc, I then spoke with another ER doctor, they also asked me what my symptoms were. I then explained all and about my Addison's disease etc. He took blood and said they will do an MRI scan because of the sharp migraine I had been getting. He then shortly came back to me and said we're not going to do MRI as its just a migraine, so we will do a CT scan.

Half an hour after I had a CT scan and talked with another doctor on how I had been feeling, he said that the CT is fine. I said so was it just a crisis. Why have I been feeling like this, what is this pain I've been getting, do I updose? He just replied I don't know and discharged me.

Still feeling like this but slightly better after injection. I went home. I'm still getting these sudden sharp abdominal pains and sharp migraine and lightheadedness, confusion etc.

The amount of people, adults and children that have been left hours, sadly passed is not right. About time awareness is spread and staff are educated. And there should be an epipen for Addison's. I'm going to make it my mission to spread awareness 💙