Hi everyone 
I’ve just been told I’m on steroids (hydrocortisone) indefinitely as it seems like chemo has damaged either my pituitary or adrenal glands. Tried searching the forums and not seen any topics on this? Is anyone familiar with it? I’ve had to stay in 4 days post single mastectomy due to complications, and now being told about potentially long term chemo damage, it just feels never ending! Anyone going through anything similar- has it been manageable?
I’m sorry to hear this. I don’t know about it in relation to BC, but have been involved with the care of a relative who has zero pituitary function following a pituitary tumour.
I would expect you to be referred to endocrinology, because it’s key to find out if it’s an adrenal insufficiency just requiring hydrocortisone or a pituitary problem which means replacing all the things that the pituitary regulates eg thyroxin, DDAVP (controls water/sodium balance in the kidneys), growth hormone (even adults need it for repair), and sometimes melatonin if sleep is poor.
Interestingly generally insulin production is regulated separately so not usually affected.
Anyways correct diagnosis is key, so an endocrinologist I would have thought.
My relative lives a completely normal life with full replacement of all the bits he doesn’t produce.
Good luck xxx
Hello @Vibby
Sorry to hear about your relative! This is all so helpful to me though so newly thrown into the endocrinology world. I feel really reassured to know that they are living day to day as normal as possible. From what I understand there will be a lot of monitoring over the next however months to see what cause is exactly so we will find out what’s going on, it’s just another diagnosis to get my head around I suppose! It sounds as though as long as I keep on top of medication I should manage fairly ok?
My nephew was 10 when he “lost” all pituitary function,he’s a completely normal 21 year old now.
It takes lots of meds and monitoring but doesn’t slow him down xx
If he can do it, you can for sure xxxx
I had my 4th lot of chemo, Trodelvy, Jul-Oct 2023. It brought my ALP right down to normal and I expected to feel good for a few months. Unfortunately I felt awful and after going in and out of hospital a few times they decided my pituitary gland wasn’t functioning so gave me a low dose for the thyroid. I had the short synthacen (I think that’s what’s it’s called) test a few times to see if my adrenal gland was okay but I’ve ended up with hydrocortisone too which instantly stopped all the other problems. It is now becoming well documented that this is a possible after effect of immunotherapy but Trodelvy doesn’t count as immunotherapy, just something very similar, so the oncologists at the hospital had said it was very unlikely to have been the chemo, I think everyone now accepts that it was. An endocrinologist took me through all the results and brought the hydrocortisone down to 15mg a day. I have had one more short synthacen test and a blood test which confirms I still need to take the tablets. I expect it will be for life now but it really isn’t a problem. I feel very well indeed and am doing lots, although my ALP is going up again. I’m stage 4 triple negative. Hope this is helpful and you begin to feel on top of everything soon. All the best. Sue
Hi Sue,
Sorry to connect through these circumstances but I’m so glad you’ve replied and you’re doing as well as can be! I suppose there was always risks associated with our treatment plans but optimistically thought we’d get away with minimal long term effects. I think I’m having one of those SST tests tomorrow, so will see what happens after that. It’s good to hear you find managing the steroids doable. It’s strange, I’ve had no obvious symptoms, so not sure in what way I should feel different but I am 5 weeks post chemo and 5 days post mastectomy so I think I’m just dealing with a lot and maybe recovery will just take some time?
Good to hear from you. It helps to,talk to others with the same circumstances. In my case I just kept feeling worse, bit dizzy, bit headachey , very tired. I didn’t know what I would say to my doctor apart from “I don’t feel well!” The hospice nurse who phones once a month didn’t like the sound of me and came to visit. She organised an instant blood test (on a Saturday afternoon) and I went to bed, phone off so I could sleep, at 9pm. I was woken by a loud banging on my front door at 4am on the Sunday morning. I was terrified as I’m on my own and then I heard the back door handle go! I knew it wasn’t burglars as they were making such a noise but all my family have keys. I just lay there thinking they would go away but then I saw a torch and he had climbed onto my balcony, right next to where I was sleeping!. He was calling my name and saying I needed to go to hospital and to look out and see the ambulance. I said I wasn’t going anywhere so he went to talk to his controller. Meanwhile I thought I’d perhaps been a bit silly but he reappeared saying my sodium level was critical and he wasn’t allowed to leave the house without me! When I went outside they had a fire engine there too, ready to break in. Hospital eventually found the pituitary was not working and as soon as I had steroids I was fine. I’m really, really good at the moment, doing more or less what I want so the steroids and thyroid tablet are no problem and easy to take. I’m only telling you all this as I hope it will put a smile on your face and reassure you as to the lengths the NHS can go. I’m seeing the oncologist today so fingers crossed. Do let me know the results of the SST test if you’d like to prolong this conversation. All the best, Sue
Blimey @19Sue, that was a bit dramatic! Glad to hear things are on a more even keel for you now. I would say your “I just don’t feel well” is how my mum would have described things before she ended up permanently on steroids. She was diagnosed with Lupus.
@Yasmeink when I first read your message I did a little searching. Although there isn’t any information here about chemotherapy affecting people’s adrenal glands I did find some medical research papers discussing this as an extremely rare side effect. It sounds as though your team are starting testing to find out what medication you will need going forward. It might take a bit if faffing while they adjust the dosage, but hopefully you should see an improvement soon.
Hi Sue,
Wow what an experience! So so grateful for those in the NHS that go above and beyond in these circumstances and you got the help you needed, I can’t imagine how scary that must have been though being woken up like that though your whole experience with your steroids is so reassuring for me. I hope your appointment with your oncologist went ok too🤞
I’ve had my test and the results have come up on MyChart but of course I have no idea what they mean! The endocrino team aren’t following up until April so I feel optimistic that means I’m on the right meds for now and nothing needs to be changed urgently.
@scientistamafier thank you so much for taking some time to help me with this I really appreciate it!!! I think there’s a mixture of immunotherapy/chemo damage that my body is taking longer to recover from that they didn’t quite anticipate for (go figure) and a massive overlap in symptoms/side effects, so they can’t pin it down to one thing or another with chemo induced menopause involved too. But yes tests have started so onwards and upwards!
Hi Yasmeink, I get my results on my patient knows best website and find it quite handy to have them before meetings etc. The endocrinologist said to me that if the SST was below 380 you need to carry on with the steroids, more than 420, you don’t. It may not be the same for you of course. Mine came back as 400 so he took the dose down to 10mg a day but at the next SST it was much lower so I’m back up to 15mg a day but that is still a very low dose, I believe. I still feel really good and have gone back to my U3A groups and choir etc but sadly when I saw the oncologist he said it has spread to my liver and lungs. Bummer. I’ve put off the next chemo for a few weeks, which he was happy with, in order to have our family holiday. Hope you keep well and not anxious. All the best. X
Oh my I’m so so sorry about the latest onc results, it’s just really unfair isn’t it. I really hope your team are able to offer you a helpful treatment plan with your next steps and you can get the most out of your holiday before reality.
Thank you for explaining RE cortisol scores- that makes a lot of sense actually comparing it to mine as it came through as 230 but I’m starting to feel optimistic and you’ve really helped.
Wishing you all the best, I’ll be thinking of you:heart: and thank you for your support during this time 