Yesterday was our 18th Wedding anniversary, we celebrated in style with a planned trip to hospital where I was booked in for a short Synacthen test ( as my cortisol levels were low or rather were in 2015 but my old consultant had never bothered to conduct this test and I had found this test result on going through some old letters) and a caffeine infusion. As this had all been booked in last Thursday by my hospital consultant we had presumed things would go smoothly. How silly we were, nothing ever goes smoothly for us.
The short Synacthen test is supposed to be conducted at around 9am in the morning when your baseline cortisol levels are at their highest. In 2015 I had been tested at 10.15 am just to check out the level. The cortisol level was found to be 107, I have written about this in a previous blog post. Basically my old consultant had said in a letter to my GP that he would run the short Synacthen test…..like a lot of things he said it never came to fruition. He promised to do a lot of things and never actually did, which amongst many things was the reason why I left his service. When I showed my new consultant ( new as in from December 2015) this letter the test was booked in for the following week.
When we arrived at the hospital yesterday immediately we asked about getting the short synathen test started and no one knew anything about it. I had to keep asking for anyone to take any notice. In the end they had to ring my hospital consultant to confirm he wanted this test to be completed. This was not my consultants fault whomever was supposed to have booked this onto the system hadn’t. The caffeine infusion was showing but not the shirt synacthen test. There were also issues with the caffeine infusion as the drugs had not been brought up from the pharmacy. So before we even got started the phrase piss up and brewery were already rattling around my head.
you can find info on the test here https://www.netdoctor.co.uk/medicines/liver-kidney-urinary-system/a7597/synacthen-tetracosactide/
A set of obs were done and then they said that they would put a cannula in and send me off for a coffee whilst we waited for the caffeine to arrive and my consultant to confirm he wanted the Synacthen test performed. I had to shoot down the idea of putting a cannula in early, its been done many times before and all that happens is it either blows or the vein collapses and the site can’t be used. We then have to go back through the fun of finding a vein that will co-operate. Thankfully after the staff talked with the duty doctor, I was believed and the attempt at getting a cannula in early was dismissed.
The time was now 9.50am, we had left the house at 7.20am, our dog sitter had to arrive at our house at 7am. The promise that we would be home by 1pm was starting to fade. The short Synacthen test takes an hour, the caffeine infusion takes two hours. We’d been at the hospital for an hour and were no further on than when we first arrived. Jay wheeled me down to the cafe where the queue was out the doors and there was no spare tables. Jay got us a drink from the newsagents and he got himself some breakfast in the form of a pasty. We got back to the waiting room at 10.30am. At 10.45am I told Jay that if we weren’t in the treatment room by 11.30am I was leaving. My head was having a bad CSF leak headache day. Being in a wheelchair means I can’t lie down and the chairs in the waiting room all had arm rests so it meant I couldn’t lie on those either. I tried to distract myself by doing some embroidery but the pain was making it harder and harder to concentrate. At 11am I asked Jay to ask the nurses if I could have some pain relief, just some paracetamol and oramorph. Normally I would bring my meds with me but for some reason I had forgotten.
At 11.20am I sent Jay into the treatment room to ask the nurses if there had been any progress on the caffeine infusion, I had given up on the synacthen test taking place. We were told it was all ready for me and to come on in. The nurse in charge brought me over some pain relief two paracetamol and codeine. It really pisses me off when hospital staff who despite seeing your prescription list decide that your pain doesn’t warrant what you would take at home. I hate the fact that hospital removes all autonomy, I manage my conditions better than any doctor or nurse ever has, yet when I go there they assume they are the experts. I pointed out that should I take the codeine I wouldn’t shit for a week and yes I used that language – because I had been sat in my wheelchair for 2 1/2 hours at this point and was in a serious amount of pain not just from my CSF leak but also my hips and spine. The codeine was binned and I got the oramorph I had requested.
I was then informed that they were going to now do the short synacthen test. Looking back now I believe they still didn’t have the caffeine from the pharmacy at this point and were doing this test to pacify me after basically doing nothing for the last two hours. You can imagine the shit they would have given me if I had rolled in 2.5 hours late for my appointment yet the same courtesy wasn’t extended to me. I am a massive supporter of the NHS, I am terrified at the Tory dream of turning it into an insurance based system but when there are 8 staff stood around chatting – and no it wasn’t about patients then you see that something really needs to change. I don’t want patients to become consumers or clients but I want them to be treated with the same respect that the doctors / nurses all seem to demand. They don’t seem to realise that there is a life for the rest of us outside of the hospital.
The first attempt at a cannula site was a bust, the vein blew . This was the state of it last night, the bruising is much worse this morning but thankfully it doesn’t hurt
The second attempt was fine but as soon as the Synacthen was injected I didn’t feel right . Sometimes I can feel a bit weird / light headed when blood is being drawn or I am getting an injection. Within a few minutes it usually passes. This however didn’t pass, I started to feel sick and dizzy. Then out of nowhere my face started to burn, it felt like it was bright red and was stinging. I said to Jay “is my face red?” he replied ” yes it is but it’s very hot in here”, I tried to let the growing sense of unease go but at the 15 minute mark when I was feeling more and more out of it I asked Jay to get a nurse and let them know I wasn’t well. All the sounds in the room had become too loud and I could smell a very strange smell, like cooked liver and over boiled veg. I kept complaining to Jay about it but he couldn’t smell it.
After seeing them stood around quite a bit all morning suddenly all hell broke loose. My bed was surrounded by 6 staff including the treatment room sister. My Obs were being done and piriton (IV) was drawn up. My normally low blood pressure that sits at 100/70 -90/60 was now 147/98 unheard of for me. My body temperature was now 37.9 having been recorded at 36.6 at 9.30am. My pulse was irregular at racing at 91bpm. I told the Sister that my blood pressure is never high and was told I was anxious due to having an allergic reaction. I couldn’t be bothered to argue as I was very frightened because I just felt so very unwell. Initially the IV piriton helped but after 10 minutes I could feel the reaction starting to come back as my face started burning and I started to feel very ill again.
Jay went and got the nurses attention again and I was given IV steroids. I have never had a reaction so severe that I needed steroids. This had been my worst reaction to date. Within 20 minutes of the IV steroids I was back to normal but then we had to wait around and be observed to ensure that the reaction didn’t start up again. I was fully checked over by a dr and at 1.50pm 5 hours after we arrived I left the hospital, with no caffeine infusion. I declined the infusion as I just wanted to go home and the staff were also concerned that although I have had the infusion before after reacting to the synacthen it was more likely I could have another bad reaction.
We finally made it through the front door at 3pm. A few hours after being home I emailed my hospital consultant who told me in all his years of being a doctor I was the first patient he has known to react to the synacthen test and then he said ” it would be you”. Basically if there is a weird reaction to have I’m your girl. He also backed the decision not to have the caffeine infusion.
I have been left with raised red bumps / rash on my face which always happens after I have an allergic reaction. That will fade over the next two weeks and I will get very dry skin which will peel off as the rash is fading. It’s a bit sore from being so dry but it’s still nowhere near what I went through yesterday.
This morning I feel like I have been run over by a bus. My HS has flared up on both sides of my groin and I have a serious amount of joint pain. For the next few days I am going to take it very easy.