Once again time has slipped by and it’s been 2 months since I posted an update! There hasn’t been a huge amount to update though really until now.
I’ve been on the metyrapone for nearly 9 weeks now and it has definitely made a difference, both good and bad. The thing with high cortisol is that your body gets used to it and coming down off it has been likened to being worse than a withdrawal from heroin. One good thing of taking medication before proper treatment is that you get the withdrawal process started in a more controlled manner. I haven’t really suffered from withdrawal because it’s been so controlled except possibly for one week. I’d had a few blood tests to check and my cortisol levels had been coming down prior to that but the last test I had they’d actually shot back up and were higher than they had been back in January! The following week I suffered with all sorts of stomach issues and spent most of the week in bed, not eating and barely drinking. I think what must have happened is for some reason the metyrapone didn’t work for a couple of days (probably due to inabsorbtion of it; Cushie’s often can’t absorb food or nutrients as they should) then it kicked back in and plummeted my levels way back down which shocked my body. I know it wasn’t a bug because I checked my temperature and it wasn’t food poisoning as my boyfriend was fine.
The good parts of lowering my cortisol are I feel slightly more energetic, my spots seem to have cleared up a bit, my face seems less red and my blood pressure is lowering and stabilising with no change in my blood pressure meds. The bad parts are that cortisol masks pain and inflammation so all my arthritic aches are back with a vengeance plus a whole bunch of new aches and pains that could be injuries I’ve sustained and not realised or may just be from the bone and muscle wastage.
As with everything, it has all kicked back off at once with my medical appointments. My orthopedics appointment came up at the end of June to check the numbness and tingling in my hands. I had an x-ray of my neck that same day (very efficient of the NHS for once!) and they said I have a ‘straight neck’. There should be a natural curve in the spine as it comes up to the skull and I don’t really have one so I’ve been sent for an MRI that I just had a couple of days ago to see if the bones are pressing against my nerves and causing the cubital tunnel syndrome. If so that is potentially more surgery but I will put that off until I’m in remission from Cushing’s.
The more exciting appointments (to me at least) have been back on my Cushing’s though. I met with my surgeon a couple of weeks ago plus another endocrinologist and they are both fantastic. The surgeon is Mr Ahmed who has actually been on a BBC programme, done a few ‘european firsts’ in surgery and has operated on a few people in my Cushing’s support group on Facebook. He’s one of the best and is a lovely guy. He was a bit miffed that no one had done another MRI yet following my positive IPSS results and tried to get me in that same day but couldn’t so I had that last week and am now awaiting the results. He informed me that to be safe he likes to take the entire half of the pituitary gland out that the tumour is on, no matter what size the tumour is. He was also very forthcoming with what to expect after surgery and that it won’t be an easy ride; the surgery itself is quick to recover from but the withdrawal again is not. He did warn me as well that it’s not guaranteed remission and that he likes to keep his patients in for a few days to check; if I’m not in remission after a few days he’ll get me into a second surgery straight away rather than send me home for a couple of days then drag me back. He has also been great in following up with a haematologist to make sure every precaution is taken against me getting more blood clots due to the operation.
The endocrinologist is brilliant as well if only for his name: Dr Toogood. He will be looking after me after the surgery I believe and was great with reassuring me and my boyfriend about the recovery stages but again was also very honest and said not everything will necessarily fix itself straight away or even at all.
Mr Ahmed also requested a CT scan which I’m having tomorrow so that he can plan his route in to my gland. This was the exciting bit for me as he then said that providing they can finally see my tumour and there’s nothing on the scan to stop him getting to it he would be looking to schedule my surgery in for August. I will have an appointment with him once the results of my MRI and CT are in and then hopefully I will get a concrete date.
It seems wrong to be excited about surgery, especially such a major one but Cushing’s is so horrible to live with and so destructive to your body it’s a relief. I know life after surgery won’t be particularly easy either, certainly to start with but at least I’m over the top of the hill then and can start to recover, whether that be 100% or just an improvement over what it currently is. I’ll be on replacement steroids and have to wean down off those, I’ll get all my aches and pains back but if just the life threatening symptoms can be resolved it will be a win.