Once again it’s been a while but there hasn’t been very much to report so that’s my excuse. I’ve had a couple of appointments this week so here’s what the latest situation is.
I had my MRI on Christmas Eve. Not the most interesting way to spend the day perhaps but it’s another step forward so I was ok with that. I got a call in the morning to say there were cancellations so could I go in a couple of hours earlier; of course I said yes. We were there with an hour to spare so had a long wait but eventually I got called in. I did have some misgivings; there is a certain strength of machine that is apparently best to detect pituitary tumours and this one was a mobile unit. I don’t know what the strength was but I immediately suspected it may not be strong enough.
The procedure they did for me consisted of having a cannula put in my arm then I was put in the MRI for around 15 minutes for my initial scan. They then brought me out, injected contrast and put me back in for another scan. Again this is not the ideal one for a pituitary tumour, it is preferred to add the contrast via IV drip whilst you’re still in the machine.
I actually got my results within 2 weeks despite it being over Christmas; the MRI came back clean. This was a little disappointing after the eye hospital indicating I probably did have a pituitary tumour but it was also encouraging as in the same letter it said I was being referred to Queen Elizabeth hospital in Birmingham. This is a teaching hospital and one of the top ones for Cushing’s in the country. There is one highly recommended endocrinologist there who trained under the best in the country and the rest of the team look to be pretty good. I am with Dr Ayuk who has given multiple talks with The Pituitary Foundation as well as doing lectures at the hospital and university. The letter also mentioned possibility of an IPSS. This is an invasive procedure that can detect pituitary tumours that can’t be seen.
I had a catch up appointment with my GP last week. I finally got signed off from work as I’m struggling massively with my mood when working, struggling to focus and have a lot of pain in my left hand when trying to type too much. She has also referred me to neurology for my hand just in case it isn’t related to the Cushing’s. It has gotten a lot worse, so much so that I can’t cut any food up now, struggle tremendously to grip anything slightly heavy and often can’t use anything with a twist cap. I also noticed I’ve lost muscle in my hand; the bit between my thumb and index on my right hand has a bump of muscle and so do Niall’s hands, however it actually indents on my left hand which probably explains the lack of grip.
This week I had both my follow up appointment for my blood pressure plus my initial appointment with Dr Ayuk. The blood pressure one went as I expected when I finally found my way to the correct place. Sandwell hospital is appallingly laid out and signed so I was in a very grumpy mood after wasting 30 minutes walking around trying to find a way into the building I needed, asking 2 people for help and being in a lot of pain from all the walking. Once I got in there though I had a lovely junior doctor who had looked up all my notes and was very informed on my progress, then the head of department that I’d seen before came in even though he didn’t have to and had a good chat with me about what to expect going forward. I’m on 2 blood pressure medications now as the 1 on its own hasn’t helped at all. Another follow up on that in 3 months so I’m pretty much moved away from him now.
My second appointment was yesterday with Dr Ayuk and it went really well. He is a lovely guy, clearly very knowledgeable and with a great bedside manner. I had a 4th year medical student in with me as well and it was great that he showed her (with my permission of course) the stretchmarks and explained to her in detail how Cushing’s stretchmarks differ to normal ones. He was then nice enough to give me his hand to help me up off the bed, something the MRI nurses didn’t do.
He took a very thorough history, looking at all my previous notes and test results plus asking me plenty of questions. He explained all the next steps, what possible treatment there could be and also assured me my Factor V Leiden wouldn’t affect anything. He had lots of stats for me and looked a little smug when he said that City hospital probably didn’t have the best machine or radiologists for reading pitutitary MRIs. When he receives my MRI scan he will take a look himself and said that a lot of the time he’ll see something they missed. If not then he will order his own MRI to be done. He’s also asking for a bone density test as high cortisol can eat away bones and cause severe osteoporosis and is also putting me in for a heart scan due to the high blood pressure. The best part was when he said he likes to get Cushing’s pushed through and treated as soon as possible and not to be surprised if I get a call to go in within a couple of weeks. I hope so!
On the way out I was asked to see the nurse as they wanted to do more tests. First I had to see the research nurse though; they do a lot of studies and research as well as teaching medical students and so I have consented to be part of a research project where they are comparing cells from people with no pituitary issues to those with people who do have issues. It won’t benefit me as it’s a long running project but if it can help someone in the future that is great. I then had to go and do yet another urine sample and give 6 vials of blood, the most yet! It has been about 3 months since I had blood drawn though so I guess I can’t really complain.
So now we’re back to waiting. I feel so buoyed up this time though; everything seems to be getting taken seriously, I am so much less stressed knowing I don’t have work for a while and everyone is being so supportive. Here’s to hoping the next lot of tests and scans can happen soon and the little beast causing all this gets rooted out.