Post Cushing’s Surgery – 1 year on

It’s been one whole year since my pituitary tumour that was causing Cushing’s was removed by the amazing (and famous!) Mr Ahmed and as such I’m now in remission. We’re never considered cured as there is around a 30% recurrence rate and it’s not an easy recovery, nor are we guaranteed to recover 100%. However I feel this milestone is worth recognising and as such I want to give an overview of all the symptoms I suffered and whether they’ve resolved yet or not. I haven’t ever written about this and some people might find it to be too much information so feel free to skip that section.

The most obvious symptom is the weight gain and so I’ve treated that as a separate section and included my Trendweight graph and a week by week table of my weight loss since surgery. The weight stuff is at the bottom of the post, so skip until you see the graph if you’re only interested in that.

Symptoms

Most of these symptoms I thought were just me hitting my mid-30s. Looking back though I’ve realised I had signs that something was wrong since around summer 2015, when my weight gain became enough that I bought a FitBit. I was still a healthy weight then but getting near the top end of that. My GP suggested Cushing’s to me in June 2018. I was diagnosed in December 2018 and my tumour was found in April 2019. I started metyrapone to control symptoms in May 2019 and had my surgery on 22 September 2019.

The reason Cushing’s is so hard to diagnose is that the symptoms so easily overlap other things as I will outline in my case. A lot can also be due to a poor lifestyle or merely getting older. As it affects a lot of hormones it mimics pregnancy and menopause which can make it particularly hard to diagnose in women (who incidentally are more likely to get Cushing’s anyway).

This is not a full list of symptoms that you can have with Cushing’s. Not everyone will get everything; a lot of people develop diabetes but I didn’t. Also a lot of them could be knock on effects of other symptoms, such as my blood shot eyes were probably a result of my high blood pressure rather than the Cushing’s, but the high blood pressure was directly from the Cushing’s.

To demonstrate, this is the size of the pituitary gland. A tiny tumour on this caused all the below problems.

Hypertension – my high blood pressure was found by my GP following my DVT in Sept 2016 and put down to the fact I was in pain. It persisted through the 6 months she was checking on me for that but wasn’t dangerously high, just the high end of normal. Once she suspected Cushing’s she tested it again and I got a home test kit. It was regularly around 145/120. Before surgery I was on two medications and it was back to the high end of normal. I slowly came off both medications starting 2 months after surgery and now sit at the low end of normal regularly, often around 95/65.

Fatigue – started around Sept 2016 I think, and I put it down to healing from the DVT. This symptom has yet to resolve; once I’m awake I’m fine but I can’t wake in the mornings. I sleep 11pm – 11am if I have work and until noon on weekends.

Poor memory/confusion/brain fog/slow word recall – this all started at the time of my blood clot and is a known side effect of clots so I put it down to that. It got worse with the Cushing’s though. At first it was just that I’d find myself not being as good with remembering things at work. Eventually it got so bad I’d blank on a conversation whilst I was saying something. I struggled to finish a sentence. One time I even blanked out in a shop for a second; all I remember is them approaching and asking if we needed any help then they were answering a question that I’d never heard asked. My word recall drastically dropped and I would talk………. like……… this. Huge gaps in sentences as I struggled to find the words. It is improving since surgery but I still struggle with my memory and word recall. I need to write everything down and set alarms for everything. Oddly my typing was less affected and it’s easier for me to type a full sentence than say one. I still struggle with certain things such as having to stare at the bottles in the shower every time to remember which is used to wash your hair, shampoo or shower gel. This was without doubt the symptom that affected me the most. I’ve never been bothered by my looks and the worst part of the weight gain was people probably thinking I’d been sitting around stuffing my face when I hadn’t, but the mental symptoms were terrifying. Not remembering something moments later, forgetting things you’ve known all your life and not knowing what you’re saying is scary. If it was only a taste of dementia (something that runs in my Dad’s side of the family), I feel even more for those suffering from it than I already did.

Weight gain/central obesity/pannum/supraclavicular fat pads – weight gain with Cushing’s is quite distinctive; it’s all around the stomach and neck. It’s also more of a ‘swollen’ fat, like a pregnancy belly, rather than simply excess, ‘flabby’ fat. The top of my stomach was swollen and distended and the bottom was a pannum, also called an apron sometimes, where you get a pouch of skin that hangs down towards your legs. Also if you look at a more normal weight gain, your collarbones will remain visible. Mine disappeared under supraclavicular fat pads. The weight gain started summer 2015. Check my weight table at the bottom to see the full picture. My weight gain was atypical as it’s usually quite rapid with Cushing’s but mine was slow and steady. Dieting and exercise can actually make weight gain faster with Cushing’s as being hungry and using lots of energy naturally increases cortisol, thus making your symptoms worse. I put on weight despite calorie counting and doing a mix of horse riding, yoga, pilates, walking and clubbercise. My arms and legs stayed thin as per classic Cushing’s but still gained some weight; my rings got too small and my FitBit was on the second to last hole on the strap. Just yesterday I had to put a new hole in the strap as I was wearing it on the last one and it was too loose.

May 2020. I wore these trousers in May 2019 to a friend’s wedding. I needed to use a panel extender as they wouldn’t do up.

PE/DVTs – my first truly obvious symptom. I do have a genetic clotting disorder but it’s a mild one and I don’t have any risk factors other than that so I believe I’d never have clotted without Cushing’s. I had a DVT in Sept 2016 and was on blood thinners until March 2017. 2 years later, in March 2019, I got multiple large clots in my lungs and am now on thinners for life.

Inability to stay asleep – this started sometime in 2015. I had no trouble getting to sleep but I would wake up regularly. At first it would be around 3am every night. Eventually it was every hour, maybe hour and a half if I was lucky. This improved within a couple of weeks of surgery and I can now happily sleep the night through.

Night sweats/excessive sweating/temperature control issues – as a kid I could do an hour of aerobics, leaping all over the place, and barely break a sweat at all. With Cushing’s, starting in 2016, I could sweat just walking a mile. Before surgery I needed to shower every day really. I can now happily go 5 days without needing to. I also felt hot all the time; I’ve never liked the heat but I walked to work one day when it was 5 degrees with no coat on. Since surgery it’s reversed and other than the heatwave days where it was 25+ I’ve felt cold most days.

Personality changes/anxiety/irritabilty/lack of confidence/loss of motivation and focus – another symptom that started around the time of my clot. I was getting stressed and irritable with work but thought it was reasonable as we were incredibly understaffed. This continued to get worse though and spread into my personal life. I’ve always been a patient person but I lost all patience for even the simplest of things. I also lost focus. Most days I couldn’t read, would have to go over things multiple times to make them sink in and couldn’t watch anything ‘thinky’, meaning we only ended up watching comedy most of the time. This has improved a lot since surgery but I do still have days where nothing makes sense and I need to go over something multiple times.

Headaches – I think these started due to my high blood pressure. I only suffered from them for about 2 months from Dec 2018 to Jan 2019 when my blood pressure was brought under control with medication.

Walking into things/tripping/clumsiness/loss of balance – late 2017 I began to notice my balance was off. I’d knock into doorways constantly or trip over nothing. I’ve always had good balance being a horse rider and practising yoga. I also became very clumsy, knocking glasses over or dropping things I’d been holding with no issue. This has improved drastically since surgery.

Muscle weakness/joint pain – again this started around the time of my DVT in Sept 2016. At first I put it down to having a couple of weeks where I physically couldn’t work due to the pain from the clot but even once this was healed and I was walking again I found I would struggle sometimes. I staved it off for quite some time with my yoga and clubbercise but eventually I found I struggled to get up from a low chair and it was impossible to get off the floor. I struggled with it in my arms too as I’d have problems holding a full saucepan or even a glass. My boyfriend had to cut my food up for me as I didn’t have the strength to. When walking I would get intense pain in my hips and lower back after 10 minutes and the same if I was standing, such as when drying the dishes. It got to the stage that I could only walk with the use of crutches if I left the flat. I had a dexascan of my bones and it showed they were thinning although I’ve avoided osteoporosis. On top of that my chest muscles lost weakness so my boobs are basically round my knees now! This is improving since surgery but very slowly. At first it actually got worse and I needed a wheelchair to leave the flat. 3 months after surgery I was back to crutches and 4 months after I could walk without them. Just before lockdown in March I managed to walk a mile home from the doctors. Lockdown has made it more awkward to improve; I did manage to do some clubbercise in April when my instructor was doing online classes but since then I haven’t done much. My knees didn’t hurt before surgery but have been agony since, though those are also slowly getting better; they’re fine provided I don’t try to kneel on the floor or walk down stairs. However I had a doctors appointment last week and walked home again so it will continue to improve. I do find I get lower back pain and left shoulder pain whenever it’s that time of the month though and it can be quite bad.

Nocturia/polyuria – the main reason I would wake at night was I needed a wee. This started sometime in 2016. It didn’t matter how much or little I’d drunk during the day, I would need to go regularly and at its worst I was going every hour. During the day I wasn’t as bad but once I had gone once, I’d need to go again. Sometimes I could go (and it would be a proper wee!) and need to go again 10 minutes later, again a proper one! This has changed almost immediately since surgery and I rarely wake in the night for the loo and only go 3 or 4 times in the day.

Hirsutism – this is excessive body and facial hair and started sometime in 2017. I noticed the odd random hair in one spot on the left side of my chin that kept coming back every time I plucked it. It came back quicker and quicker and eventually brought friends with it! I developed a beard and moustache; thankfully being blonde it wasn’t too obvious but it really got on my nerves. I also got a lot more hair elsewhere; my arms and legs went crazy and needed shaving every couple of days really and I got hair on my stomach and chest. Since surgery it has mostly improved; hair growth is much slower and mostly only where it should be. My arm hair is thicker than it was and the facial hair won’t go away but is finer than it was.

Doing clubbercise at home during lockdown, 7 months after surgery

Thinning hair – as everywhere else was getting hairier, my head hair was thinning. Thankfully it never got bad enough that I had a bald patch but it definitely got thinner and my comb would be covered in it. This is slowly improving since surgery and looks healthier now. Weirdly however my naturally straight hair is now naturally curly. I’m getting tiny hairs showing new growth particularly around the front.

Facial plethora/moon face – another very obvious and ‘classic’ Cushing’s symptom which started around late 2016. Again this differs from normal weight gain as many larger people still have defined cheeks and chin. Those of us with Cushing’s lose all definition as our face swells, even our eyes end up looking more closed due to the puffiness around them. From the front my ears disappeared behind the swelling and my chin just became one of three rolls of fat. The facial plethora refers to your face becoming quite red; people at work would comment on it but as I’d usually walked 3 miles to get there I just assumed it was from that. My face has slimmed down greatly since surgery although it’s not quite back to how it was yet and my chins are now just one! I lost the redness within just a couple of weeks of surgery.

Buffalo hump – something else that often indicates Cushing’s. This is a large lump of fat on the back of the base of your neck, where it meets your shoulders. It can make you look like you’re holding your head forward when you’re not. It wasn’t painful in me or at all obvious I had it since it’s obviously out of my view so I’d struggle to say when this first appeared. Again because it’s out of sight I often forgot about this symptom but it had definitely disappeared by around 4 months after surgery.

Striae – another classic Cushing’s symptom is stretchmarks. Many people dismiss this as you’ve put on weight, of course you’ll get stretchmarks! Cushing’s striae however are different; they’re purple and ‘angry’ looking. I didn’t take any pictures unfortunately. They started early 2018 and were only a few but they soon spread. I had them across my stomach, breasts, lower back, inside upper arms and inside upper thighs. These slowly faded since surgery and whilst they’ll never fully disappear they’re now just faint, silvery stripes. Appropriate for a rare disease as we’re often called zebras; Cushing’s patients truly are!

Dark skin patches – my first patches were in Sept 2016. My GP thought they were something called “cafe au lait” patches which are often caused by a fungal or bacterial infection. I used some cream on them (they were on my chest) but they just wouldn’t go. I ended up with dark patches on the back of my neck, under my arms, around my groin, across my knuckles and around my eyes. I also found I tanned (being fair skinned I usually just burn) and the tan didn’t go. I had a white mark under my FitBit for about 3 years! Since the surgery my skin has lost the extra pigmentation, my tan has gone and there are fewer dark patches, although my right eye still has an odd different coloured patch near it that isn’t very visible thanks to my glasses.

Bruise easily – I didn’t get this often but I had the odd mysterious bruise appear from nowhere, one in particular that I remember was the inside of my upper arm so not somewhere I could have easily knocked. I also had a spot that developed and burst under my stomach where it hung down. After it burst it bruised up and remained bruised for 2 years. I haven’t noticed any random bruising since surgery.

Edema in legs/feet/ankles – something else I put down to my DVT. My left calf is slightly swollen due to the clot but both my feet started to swell regularly, even if I sat with them elevated. Some days you couldn’t see the ankle bone and they looked almost shiny from where the skin was stretched so much. This quickly went after surgery and had probably stopped entirely about 6 weeks later.

Thinning skin/slow to heal – as I mentioned under bruising, I was slow to heal up so any cuts or bruises hung around for ages. I also noticed my skin was thin; I could see veins much more easily and sometimes just very lightly scratching an itch would cause scrapes and cuts. I’ve only noticed one cut since my surgery which was when my degu bit me! He did bite hard and deep so it took a long time to heal anyway, but I think this is back to normal since the surgery.

Acne – I started to notice this on my face around my jawline. Oddly it started on the right then moved over to the left. I thought it was just from putting my chin in my hand when working. It spread slowly down the left side of my neck and then onto my chest, mainly still the left side but the odd one on the right. Since surgery I occasionally get a spot but won’t constantly have one, whereas before surgery I always had a few.

Loss of libido – Before surgery I wasn’t fussed if my boyfriend didn’t come near me. Again this is one that’s often cited as an actual symptom of Cushing’s but it’s tough; after all you’re so disillusioned at how you’ve changed to look at that you just doubt anyone would be interested anyway. It has improved since surgery though I’m probably still happier than I was pre-Cushing’s if we have a little dry spell.

Irregular/lack of menstruation – I actually was lucky and mine mostly stayed regular through Cushing’s. I did have one month at the start of it all, summer 2015, where it was late, and another month a couple of years later where I randomly had a week bleed, a week off, a week bleed, a week off, a week bleed. Other than that it stayed fine. Surgery messed up my hormones as I’d just finished a bleed and started straight away the day after surgery again. Since then I’ve been regular but it’s been heavier and more painful.

Dry, itchy skin – this drove me insane for at least a year with my Cushing’s. It started one December when I itched all over. I went for tests which showed no infections and the locum I saw (who was not the best) said it must be the heat. It was barely above 0. I continued to get episodes of this on and off. At first I thought it corresponded with my menstrual cycle but it didn’t. I couldn’t go out when it was like this because when I say I itched all over, I mean it and it would be bad enough that I’d have to scratch. I’m not sure what stopped it but it fixed itself before surgery. It’s possible it stopped when I went on metyrapone and my cortisol levels dropped.

With a group of my fellow beautiful zebras 4 months after my surgery

Tinnitus – I noticed this just after my DVT in Sept 2016. When I go to sleep I can hear my pulse in my left ear. I assumed it was the high blood pressure. However this has yet to go away even now my blood pressure is normal so I’ll be bringing it up with my GP.

Vocal changes – with Cushing’s I noticed my voice get more gravelly and harsh. It would sometimes break and squeak or I’d feel like I was losing it. It seems more stable since surgery however it has definitely changed; I often sing vocals on the video game Rock Band and all the songs I can usually 100% no problem (Evanescence, Muse, Lady Antebellum) I can no longer do that. “Hysteria” is one I was so good at, I got my friend the achievement years ago for 100% an expert song when I was so drunk I could barely stand up! I’m hoping I can train my voice back to normal. I did notice I found lower scale songs easier to sing when I tried again recently though.

Bloodshot eyes/conjunctival hemorrhage – I believe these were a symptom of my high blood pressure rather than the Cushing’s itself. I regularly had bloodshot eyes and once had half an eye turn red because a vessel had burst. Since my blood pressure has been under control I’ve had very few occasions of bloodshot eyes.

Numbness in hands/peripheral neuropathy – this definitely wasn’t caused by Cushing’s, as I had cubital tunnel syndrome since around 2012. However it was definitely accelerated by the Cushing’s. It has improved slightly since surgery but not by much and I need surgery on both elbows to correct it. I get numb little fingers if I read in bed or use a phone and some days get pain up to my elbow.

Thick/full feeling in throat – I don’t know if this was due to Cushing’s or not. I suspect it was the weight gain and swelling which sometimes made it feel as though my throat was smaller than it should be. I haven’t felt it since surgery.

High cholesterol – my cholesterol was high with Cushing’s despite me mostly watching what I ate and exercising well. Compare that with my previous result from when I used to eat nothing but ready meals and the only exercise I got was working in a shop yet it was lower and there was definitely something going on there. It does seem to be dropping now and is in the normal range.

HPV in smear/coldsores/verucca – admittedly I was naughty and didn’t have a smear until I was 32. However my first one showed HPV (not an issue, most of us have it) but that also meant they investigated further and found I had CIN3 – precancerous cells. It was treated and all was fine thankfully. However HPV is the same virus that causes coldsores and veruccas. I had a couple of coldsores whilst I had active Cushing’s and when I went to a podiatrist regarding a Morton’s Neuroma (caused by my weight gain) she commented I had a verucca. I’ve never had one before in my life and hadn’t been anywhere to catch one so I think this was a sign of a weakened immune system, something common with Cushing’s, letting the HPV cause symptoms it would otherwise have fought off. Oddly enough however I rarely caught colds with Cushing’s. The verucca is still there but I’ve had no more coldsores. I’m waiting on my recent smear results.

Gritting teeth/clenched jaw – I’m not sure if this is a symptom or not but I’d sometimes notice I was doing this. Since people who are stressed often grit their teeth or clench their jaw it would make sense. I haven’t noticed myself doing it since surgery.

Adrenal insufficiency – because my tumour was spitting out so much ACTH, my pituitary gland hasn’t had to for years. As such, now the tumour has gone my gland has no idea how to do that work again. It’s not asking my body to make cortisol so I have to take replacements. Hopefully it will figure it back out but if not I’ll need steroids for life. The trouble is we need cortisol to live. Our bodies naturally raise it regularly; if we’re hungry, doing vigorous exercise, if we’re ill or in pain, if someone we love dies, even if it’s too warm. So although I have a certain dose to take every day I have to pay attention to my body and take more if necessary. If I don’t take enough I can end up in adrenal crisis, a situation that can be fatal within hours. I came close to a crisis just last month due to work stressing me out over having to drop my contracted hours; I didn’t even think I was that stressed about it. I have to keep my steroids within reach all the time and have an emergency injection if it gets too bad; if I use that I need to go to hospital. It also means future surgery is more awkward as I’ll need high doses during and following the surgery.

Today, 1 year on!

Cough/runny nose – since the surgery I have a cough that comes and goes. It doesn’t seem to have a set cycle but every few weeks I’ll feel the need to cough, mostly when I lie down but occasionally during the day. It’s always in the same spot, high at the back of my throat on the right. I also feel like my nose is running most days so I’m constantly wiping at it or blowing. It’s like having a permanent cold.

Kidney cyst – found on an ultrasound 4 months after my surgery. It’s benign they say but I suspect Cushing’s has caused it.

Hernia – I have a small hernia thanks to the weight gain. I suspect it looked worse on the ultrasound 4 months post-surgery as they suspected I would need surgery to repair it however I was told last month I won’t need that. I think because my weight has gone down it was being stretched to look bigger than it was.

Gallstones – again these showed up on the hernia ultrasound and again, although I can’t confirm it for sure, I suspect they’ve been caused by Cushing’s as many of us do have gallbladder issues. For now I don’t need anything done but have to watch out for pain.

Non-alcoholic fatty liver – something else seen on the ultrasound and something else incredibly common in Cushing’s patients. I had my wild days when younger but less so than most people as I pretty much only drink vodka and only very watered down! Since my first clot I gave alcohol up entirely and for a good 6 years before that I’d probably only have a drink once a year anyway. Hopefully this will slowly resolve itself.

Breast size – thanks to my boobs gravitating towards my knees with Cushing’s I’ve now leapt up in bra size! I was never small anyway, was a 32D but I’m now a 34GG! I can’t see this resolving so I’m probably stuck with it.

Blepharitis – I’m not certain if it started before my surgery but since then I’ve had very dry eyes. In March my GP diagnosed blepharitis; little ‘spots’ of stuck oil in my eyelids. Touch wood though I haven’t had too many issues with it the last couple of months. With active Cushing’s I definitely had dry eyes though that would feel prickly if I was tired and I still get that if I stay up later than midnight.

Weight gain and loss

My TrendWeight graph. The first line is when I had my DVT.
The second is when my GP first suspected Cushing’s. Up until almost the second line I was exercising daily, either walking, horse riding, doing yoga, pilates or clubbercise. Just before that line I had to stop due to a Morton’s neuroma. The entire time I was calorie counting.
The third line is when I went on metyrapone to lower my cortisol levels.
The fourth line is when I had my surgery. I haven’t exercised since or specifically dieted (though for the first 4 months I had no appetite) and the weight has just dropped off.
WeekWeightWeekly +/-Overall +/-
27/08/2015140lbsStarting weight
17/06/2019208lbsHighest weight+68lbs
21/09/2019199lbsNight before surgery, after 4 months of taking metyrapone-9lbs
29/09/2019197lbs-2lbs-11lbs
6/10/2019194lbs-3lbs-14lbs
13/10/2019190lbs-4lbs-18lbs
20/10/2019187lbs-3lbs-21lbs
27/10/2019187lbs-21lbs
3/11/2019186lbs-1lb-22lbs
10/11/2019183lbs-3lbs-25lbs
17/11/2019182lbs-1lb-26lbs
24/11/2019181lbs-1lb-27lbs
01/12/2019180lbs-1lb-28lbs
08/12/2019178lbs-2lbs-30lbs
15/12/2019175lbs-3lbs-33lbs
22/12/2019175lbs-33lbs
29/12/2019172lbs-3lbs-36lbs
05/01/2020170lbs-2lbs-38lbs
12/01/2020168lbs-2lbs-40lbs
19/01/2020165lbs-3lbs-43lbs
26/01/2020166lbs+1lb-42lbs
02/02/2020165lbs-1lb-43lbs
09/02/2020162lbs-3lbs-46lbs
16/02/2020162lbs-46lbs
23/02/2020160lbs-2lbs-48lbs
01/03/2020159lbs-1lb-49lbs
08/03/2020160lbs+1lb-48lbs
15/03/2020157lbs-3lbs-51lbs
22/03/2020156lbs-1lb-52lbs
29/03/2020155lbs-1lb-53lbs
05/04/2020154lbs-1lb-54lbs
12/04/2020153lbs-1lb-55lbs
19/04/2020152lbs-1lb-56lbs
26/04/2020152lbs-56lbs
03/05/2020151lbs-1lb-57lbs
10/05/2020149lbs-2lbs-59lbs
17/05/2020149lbs-59lbs
24/05/2020149lbs-59lbs
31/05/2020149lbs-59lbs
07/06/2020146lbs-3lbs-62lbs
14/06/2020146lbs-62lbs
21/06/2020147lbs+1lb-61lbs
28/06/2020146lbs-1lb-62lbs
05/07/2020145lbs-1lb-63lbs
12/07/2020145lbs-63lbs
19/07/2020145lbs-63lbs
26/07/2020145lbs-63lbs
02/08/2020144lbs-1lb-64lbs
09/08/2020143lbs-1lb-65lbs
16/08/2020143lbs-65lbs
23/08/2020141lbs-2lbs-67lbs
30/08/2020142lbs+1lb-66lbs
06/09/2020141lbs-1lb-67lbs
13/09/2020140lbs-1lb-68lbs
22/09/2020140lbs-68lbs

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