I can’t believe it’s double figures already. It seems to have gone so fast; I’ll soon be at my 1 year anniversary.
Of course we’re still in the midst of the Covid-19 lockdown and I did see one article on the BBC that rings true for healthcare in general and the Cushing’s recovery but shouldn’t. “Often rehabilitation is seen as a Cinderella service and not a priority” and “I am getting better slowly,” she says, “but I can’t be too ambitious. It is frustrating to be on this rollercoaster, with absolutely no idea how long the journey will take.” Now I’ve consistently been happy with my follow up, even with the restrictions of Covid, but it’s true. The amount of damage that Cushing’s causes and yet no rehab is offered to most. You break your arm and have it in a cast for a few weeks, you get physiotherapy to give you exercises to build up the muscles again but nothing is given for Cushing’s despite potentially having years of muscle weakness to build back up. Not to mention the mental aspects of having to constantly learn your new normal, taking 1 step back every so often when you have a bad day and having to constantly be on the look out to ensure you don’t suffer an adrenal crisis.
I actually had my first follow up since 6 weeks post surgery this month. It was of course over the phone and was with the leading endocrinologist at my hospital, a wonderful woman who trained under the leading Cushing’s expert in the UK and travels the world giving talks on it along with writing papers. I haven’t had any dealings with her previously but I was very impressed. She’d read through my notes and knew my previous blood test results so she was mainly asking how my symptoms are resolving, which ones are left and what medications I’m still on. She explained the plan is to do blood tests every 6 months for the next 2 years including full hormone panels to make sure my thyroid is still behaving and I don’t have any issues with low potassium again. These will be done like the SST so I’ll have to take my HC the morning before but no other doses until after the tests. I’ve just had my appointment through for that and it’s actually 1 week after my 11 month anniversary so it’s fairly delayed but that’s the state of the world right now. She also went over what all the cortisol results from this test could mean; if it’s still low I’m still in remission, if it’s normal I’m potentially healthy or it could be a recurrence and of course high would indicate a recurrence too.
When I received my follow up letter from this appointment it also highlighted to me something my support group has stressed all along. No matter how good your doctors are, always request copies of your results. I have access to my results on a portal but the results back in November showed as being in range for my thyroid. This letter however mentions that my fT3 was high, which could indicate an overactive thyroid. No one has mentioned that to me before. So always get results where you can; if I’d known this earlier perhaps my GP could’ve looked into it in the last 8 months. For all I know this might be why I’m struggling to wake up on a morning and could be sorted with medication.
On to the improvements. Lockdown has eased slightly here in the UK so I headed out to my friend’s house on Saturday evening. He doesn’t go out other than for food shopping like us so I knew it would be relatively safe. Last time I went, early March, I managed for the first time to get up his stairs without hanging onto the bannister and dragging myself up. I’m pleased to say I was able to walk up them normally still, albeit slowly. I was also able to walk down them normally but slowly, rather than moving one foot down then the other foot to the same step.
I’ve been off my blood pressure medication for 1 month and it’s remained at the low end of normal which is normal for me. I’m still struggling to wake before noon.
It’s been 5 months and I’m just finally getting back to half of my hours at work. 20 hours, all I do is admin work from home. It still exhausts me. I do still get focus issues and lose the odd word but my mental symptoms are greatly improved.
I almost forgot the most important bit. Our shower is an attachment over the bath. For the first couple of months after surgery I required my boyfriend’s help to get in and out. After a while I was naughty and got out myself by holding onto the sink and have been doing that for months. This past month I’ve been getting out without having to hold onto anything!
For those curious about the weight loss after surgery, bear in mind it’s different for everyone but I’ve included my TrendWeight graph. The first line is when I started metyrapone. Over those 4 months I lost 9lbs (all in one week when I had major cortisol withdrawal and vomited for the week then it just stayed off). The second line is when I had my surgery. Since then at no point have I tried to lose weight (other than doing a little exercise through April/May but barely 30 mins a week). Around 140lbs is my pre-Cushing’s weight. Not far to go but it has slowed down a lot. My face slimmed down within a week or 2 of surgery. My stomach still looks bigger than it should as I have a huge hernia thanks to the Cushing’s but I’m now down from 36 (obese) on the BMI scale to about 25.7. I’ll soon be in the ‘normal’ range instead of overweight.