I wasn’t intending to do an update before the four year mark but this March, on my birthday, I had some excellent news. I’m no longer steroid dependant!

Following surgery for Cushing’s, we go into remission and produce next to no cortisol of our own. This is because our tumour has been doing the work for us for so long that our glands have usually become lazy and forgotten how to do it. For adrenal patients, they usually recover their own production a bit faster as they have a second gland that that picks up the slack more easily. For pituitary patients like me, we usually take a bit longer as we’ve had some of the actual gland removed which tends to make it quite grumpy! There is also always a chance you won’t regain your own function and will remain steroid dependant for life.

For those who have kept up with this blog you’ll know I was worried about my recent weight gain over the last eighteen months again. Following my pituitary surgery I lost the entire five stone that I’d gained with Cushing’s and kept it off for around ten months with no issues. I then slowly went up to seventeen pounds overweight again. My SSTs showed my cortisol production was improving, but still low. I managed to taper down slowly over a few months from 20mg of hydrocortisone a day to 10mg. I lost maybe three pounds of the excess weight but no more.

Fast forward to February 2023 and I had another SST. I’d voiced my concerns to my endocrinologist and had been having them every three months instead of every six months. This one finally paid off. My base cortisol was 385, rising to 487 after injecting with synacthen. This shows I’m producing a normal amount of cortisol first thing in the morning (albeit at the lower end of the scale, ideally it should be between 350 – 550) and my adrenals were able to respond when asked to produce extra in case of stress.

I’m waiting for an appointment to discuss everything still; unfortunately they wanted to see me at the start of March while I was on holiday. Although my cortisol rose, it may not rise if there’s a large stress on my body. Covid for example causes us to require cortisol in the thousands, so I need to keep some hydrocortisone tablets plus my emergency injection kit around for a few months and still pay attention to how I feel to avoid risk of adrenal crisis. Eventually things should be back to normal as my glands get used to shouldering the full workload again.

I’ve weaned off the steroids relatively easily and have now been steroid free for about a month. I don’t feel any different at all and have lost some of the extra weight; I’m now only ten pounds overweight. My body fat percentage has also come down. Following surgery it had dropped from 42% to 30%; as I began gaining weight again I got back up to 37.5%. As of today it is 35.3%.

I’m still only considered in remission and will be for life. I will attend annual appointments with my endocrinologist and will have to do the dexamethasone test annually to ensure there are no signs of it returning. For patients who achieved true remission (cortisol under 50 following surgery), the chance of recurrence is 10% so it’s not very likely, but is possible. If I feel I’m getting any symptoms again they’ll do the dexamethasone test sooner as my consultant has found patients are often quicker to notice the symptoms the second time around.

My next step is to minimise the long term effects. I’ve finally got an MRI for my hip pain today and saw an excellent, understanding physio who referred me for the MRI a couple of weeks ago so I’m hoping there is no permanent damage in there and I’ll be able to work with him to build up my strength and minimise the pain. Once I get the all clear from the MRI I will start building up some general exercises to attempt to rebuild muscle in general. My stomach is still weak and looks flabby, my upper arms are the same and my legs and glutes are flat and weak. Of course if the MRI isn’t clear I will have to avoid too much exercise and see what the plan is. Fingers crossed there is no avascular necrosis there. If not, it’s just a matter of time and work to improve things for me.