Post Cushing’s Surgery – 18 months on

18 months already! It seems to have gone by so quickly. I will give an update on some of the victories and trials I’ve faced since my 1 year update and things I’m still learning about this disease and myself. There has also been a virtual conference held by the Pituitary Foundation in March 2021 and I highly recommend this for videos, not just for Cushing’s but for multiple pituitary issues and information.

I haven’t been bothering to deliberately try to lose weight yet. If you’ve followed my previous posts you know it’s been dropping off naturally and I’m down to a healthy BMI now within the year of surgery. In the last 6 months it’s bounced between 136lbs and 141lbs. I’m quite happy with that as it’s still healthy and although I’d like to get nearer 125lbs, after having been 209lbs I’m just grateful for what I’ve got. I might make an effort at some point but for now I’m just looking after myself so if I want to snack I’m going to snack. My stomach still looks bloated at the top and the bottom of it has loose skin so I’m hoping at the very least that will gradually tighten up and go away. I am now wearing size 10s again though, albeit with a slight muffin top. At 1 year I was still wearing 14s so I am confident the stomach is slowly shrinking.

A huge improvement, I look like me again! You can see some of the new growth flyaway hairs around my parting.

On that topic I’ve spent the last 5 months taking up yoga again. I won’t go into all the details as I’ve done a couple of blog posts about it but it does seem to have helped. I’ve definitely noticed an improvement in my balance and a slight improvement in my lower back pain. I think it will take a while to see a large difference, if I ever do, but any improvement is a bonus. I particularly noticed a difference when I was getting out of a taxi recently. Stepping out of it and walking up to my door felt normal. I was walking at my old pace and even able to climb up the two flights of stairs relatively easily.

Sometimes it hits home that I’m still greatly affected though. Before Cushing’s I could easily walk 8 miles a day, 3 miles at 7am just to get to work. With the Cushing’s I ended up on crutches and even in a wheelchair for a couple of months if I wanted to go outside. In November 2020 I went for a short walk along the canal when lockdown restrictions eased with a friend. We were out for about 50 minutes and probably walked about 2 miles. I felt fine for most of it but the last 5 minutes caused my hip to start aching. I spent the next 3 days exhausted both mentally and physically. This was before my yoga started. In March 2021 I met up again with the same friend. We walked a very slightly shorter distance but only by maybe a third of a mile. It took us about 30 minutes and one of my knees went a bit funny towards the end but overall I was much better off. I was tired the next couple of days but less so than November. So that shows I’m improving but it’s still a long way off what I used to be able to do only 4 years ago.

My memory has improved but also still has issues. A few weeks ago I randomly remembered my childhood landline number, something that I haven’t used in 15 years. Yet I still have problems remembering a TV programme I watched (and definitely paid attention to!) the day before. However it does seem to vary where I have better days and can remember relatively short term things. The hormonal side of things remains. I used to be called cold hearted as I never cried at films. These days an advert can set me off. I also do find it takes less time to get annoyed at something. For example I was doing some sewing the other week and the spool just would not load correctly. I got very angry very quickly at it.

My periods are still absolutely horrendous. The period itself has calmed down; at one point they’d become very heavy but they’re much more manageable now. I have always had a little lower back pain but it used to only be for maybe 3 days in the middle of it all. These days it will start aching anywhere up to a week before and continue until a couple of days after. I also now get horrible cramping. I have to up dose my hydrocortisone during this week usually to cope with the extra pain as that really eats up cortisol. I can barely do anything. Exercise is out and I struggle to do anything I enjoy. I’ll usually end up putting something easy to watch on in the evening rather than play a game as I can’t focus and am more likely to go to bed early too. Considering I still don’t wake until 11am and work until 5pm this means my days can be really short.

Just as a reminder of how I looked the night before my surgery. You can ‘see’ the fat but it doesn’t compute (to me at least) just how thick that layer is in a photo. You can also see the acne on my chest which has completely cleared with remission.

The one thing that showed I’ve improved though happened by accident quite recently. The CSRF website (an American charity for Cushing’s research) had a survey asking people with active Cushing’s or in remission about insomnia. One of the questions was “What are the 3 main Cushing’s symptoms you’re having to deal with right now?”; if I’d done this with active Cushing’s I would’ve been trying to find a way to ‘cheat’ and cram about 30 of them into those 3 boxes. Instead I put “Fatigue”, “Lower back and hip pain” and then sat staring at the screen for a good couple of minutes before thinking to put in “Adrenal Insufficiency”. This was incredibly eye opening to me and is just another reason I am glad I’ve been blogging my journey. It’s so easy when having a bad day to feel like there have been no improvements but things like this show you just how far you’ve come.

It’s particularly odd though that I struggled to remember adrenal insufficiency. It’s on my mind every day. I’m constantly on the lookout for symptoms. As I’ve mentioned I’m guaranteed to get low cortisol when it’s my period and I also had a huge drop in my cortisol recently when I had my covid vaccine. The vaccine itself caused me very little issue. I had it at 11.30am and barely felt anything. I took an extra 5mg of hydrocortisone beforehand simply because it was over 3 hours since my last dose and felt fine. I had my usual dose at 02.00pm and still felt fine. At 08.00pm I started to get an ache in my arm but nothing major; it felt no different to when I’d had my flu jab. However at 10.30pm I suddenly started to shiver uncontrollably. This can be a side effect of the vaccine but it is also a sign of low cortisol for me. I usually feel some abdominal pain before this but I’d had nothing so I wasn’t sure but I took extra hydrocortisone anyway, just in case. I actually ended up taking an extra 30mg over an hour and a half. I spent the next few hours snuggled up under the duvet with my thick night dress, a fluffy dressing gown, fluffy socks on and curled up as close as possible to my boyfriend to steal his heat. Eventually at around 01.00am I stopped shivering and got to sleep. I woke around 05.00am with a mild headache which a paracetemol quickly sorted out. The next day I felt fine, just a little spaced out which is usually how I feel after low cortisol, so I think the shivering was just a random drop in my cortisol. As the day went on I felt better and the following day I was perfectly fine.

One other symptom I still definitely have is the facial hair. The other body hair has resolved itself and I keep finding new growth in my head hair but my beard and moustache will not go. Luckily it’s very fine, very light hair so you can’t see it unless you really look but I can feel it’s there. I’m really hoping it will go; one lady in my support group said hers went after around 2 years so there is hope for me yet. My head hair however has improved a lot. It’s much thicker than it was pre-surgery and I still keep finding clumps of new growth. The new waviness seems to be straightening out a little as it’s getting longer but is still there.

I did manage to get hold of some of my MRI pictures which are quite fascinating. These were from my first MRI, on Christmas Eve 2018, 10 months before my surgery. It obviously takes years to learn to read them so I have been having fun guessing at what is what but one thing I have figured out is that the bright white outline around the whole head obviously is my skin and fat layer. When you look at the huge white pockets in my cheeks, under my chin and around my neck (you can’t even see my buffalo hump in these pictures), it really hits home as to why Cushing’s makes such a difference in our appearance. It’s odd as you can obviously tell from normal photos but it doesn’t quite hit you as to how thick that layer of fat must be until you see it quite literally in black and white on an MRI.

Profile – This isn’t even my hump but look at all the fat at the back of the neck. You can also see it starting under my chin.
Top down slice partway down my forehead – Fatpads on my cheeks. You can even see the indent where my glasses would usually sit.
Top down slice near the top of my head – I think this is top down with the front of my face at the bottom of the image. The huge amounts of white that can be seen must be the fat/swelling that was around my eyes, cheeks and going down towards my chin.

I’ve included the below video specifically from the Pituitary Foundation’s virtual conference because it’s actually relevant to everyone, whether you’ve had an illness or not. With Cushing’s the psychological impact is huge and often not recognised by either the medical teams or the patient’s friends and family. It’s a constant worry; am I just fat and lazy? What if it comes back? What are people thinking about me? Why aren’t I completely back to normal? I have days I get angry because I feel it has stolen a lot from me. I want to live in the countryside again but I will need lifelong attention from my endocrine team and don’t want to move somewhere with no experience of Cushing’s. Even if I found somewhere, I wouldn’t be able to go on 10 mile hikes through forests and hills as I would like to. I could still sit out and enjoy it but it’s still stolen that one bit of enjoyment from me. The fear of it coming back is very real as well. I can be low one day and the next day find a bit of dry skin and instantly worry it’s returning. This isn’t helped due to the sad fact that so many of my Cushing’s friends are going through confirmed or suspected recurrences at the moment. The only way to truly ‘cure’ Cushing’s is remove both adrenals which comes with its own struggles.

The Pituitary Foundation held a virtual conference in March 2021 with lots of incredibly informative videos. This is one that is great for everyone as it teaches some basics about mental health that will help everyone improve theirs and also covers how to cope with the pandemic. It’s also incredibly validating for those of us still suffering and wondering why we don’t feel 100% or completely happy yet. Visit http://www.pituitary.org.uk and click on Virtual Conference to see their full range of videos.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s