This isn’t going to be a cheerful post, you’ve been warned.
My potential Cushing’s diagnosis is slowly moving along. I met up with an endocrinologist this week for the first time; he’s not the specialist that I was referred to but is part of his team and it was an encouraging first appointment. He didn’t instantly dismiss me and in fact said it is looking likely from the symptoms that it is Cushing’s however he also stressed that 60% of Cushing’s referrals turn out not to be that after all. He was very thorough in his questioning and took a note of all my test results from my GP but said they’d like to have their own labs run tests rather than rely on those I’ve already done. He also wanted to try to rule out some more common things such as diabetes.
So I had a blood test taken that day which was just a standard blood test to rule out the common possibilities. I then also had to do another 24 hour urine collection plus a low dose dexamethasone suppression test. This consists of taking an artificial steroid at midnight and then having a blood test taken the next morning at 9am. The idea is that your body should detect the higher level of steroids due to the dexamethasone and stop/suppress its own production of steroids in response to this. If it doesn’t then it indicates a tumour as tumours are not subject to your body’s own control systems. I have read however that a lot of people do suppress on this test who actually do have Cushing’s so it’s not the most accurate. I’ve done these and now the final test is another blood test which will check for my levels of ACTH (one of the many hormones that goes out of control with Cushing’s) so I’m popping back to the hospital next week to do that. I will then see the endocrinologist again in 2 months time so sometime in December.
Just to top off all the hospital visits I had a bit of a blood shot eye a couple of weeks ago. I say ‘a bit’; one half of my eye was entirely flooded with blood. I was going to just leave it but my mum was staying with me and insisted I head to the opticians to get it checked. So off I went and they said it’s probably fine but they were slightly concerned as they couldn’t see an edge to it where the eyeball goes back round into my skull. So they said to keep a watch on it and if the white still couldn’t be seen back there within a week to check back with them as this could indicate a bleed behind the eye which is more serious. Of course my body being so stupid at the moment has decided to clear the blood from most of the eye except round the back. Off I popped yesterday for the follow up appointment and I’m now referred to the eye hospital this week as well.
So none of that really has anything to do with the title of this post but it is leading up to it. I’m starting to wonder just where I will be in 2 months when I go back. I saw my GP again this week to catch her up on what has been agreed. It’s probably been 2 months since I last saw her and she said I look different again and I feel much worse. I definitely feel I’ve declined as I’ve started having hip and back problems, my striae (stretchmarks) are all over now whereas before I only had a couple and mentally I’ve noticed a lot more issues.
I mentioned my mum had come to stay for a week. We went into town whilst she was here to do some shopping and we had to go to Waterstones for a crossword book. I knew that’s what we were going in for but as far as I’m concerned this is how the trip went:
Sales assistant: “Hi there, is there anything in particular you’re looking for? Take the lift up to the second floor and it’s in the Indoor Gaming section to the right in the window.”
At no point was I aware of Mum answering him. I was stood there wondering how he could answer where something was when no one had asked him. I actually had a blank spot in my memory instantly. I still have no recollection of Mum responding to him. This is terrifying to me. It’s not the only time it has happened either but it is getting more frequent. Two weeks running I’ve watched The Great British Bake Off only to look on Twitter the next day and see quotes that the contestants had said which I don’t recall. GBBO is one of the few TV programmes I pay full attention to and Niall remembers them saying these things but I have no memory whatsoever. Usually the way I notice this is more of a concentration or focus issue where I’ll be having a conversation with someone then realise they’ve asked me something but I have no clue what it is.
This is why I constantly have a pen and notepad with me, particularly for medical appointments. I also try to take Niall to anything important so that he can remember things for me. At 34 (well any age) to be having blank spots and losing thought processes is incredibly scary especially as I’ve always been a very good listener and had a great memory.