I’d be immensely grateful for any advice or shared experiences. Thanks in advance!
I am wondering whether my history of Pembrolizumab, a pneumonitis side effect then a lot of steroids has caused either thyroid or adrenal problems. These have never had blood test checks since late 2022. I will explain my story then my current symptoms below:
After 6 out of 8 scheduled Pembros April- December ‘22 following Stsge 3B groin dissection I suffered a side effect of pneumonitis in Jan ‘23. 2 weeks on a respiratory ward then discharged on 60mg /day steroids weaning by 10mg each week.
Putting to one side the miniscule support from my oncology team I had several recurrences during 2023 where I had to self diagnose and then self prescribe my steroid “ weaning starter quantity “. Bizarre I know but it is very hard also to get urgent GP appointments.
I had several recurrences hence a lot of steroids then September to December ‘23 regained my fitness and social life. But on 16/12/23 I ended up in A&E - fainted, chest infection, antibiotics prescribed. Back at A&E 27/12; still infection markers ( via blood tests), more antibiotics. GP early January, sputum test, bad haemophilus influenzae confirmed, very high doses of a stronger antibiotic. 3rd visit to A&E last week ( 15 hours!). All tests clear. “ You can go home” to which I replied “but I still feel ill” ! I felt wretched. Will explain symptoms below.
Did some research plus spoke to MacMillan Helpline on Friday. I now have a blood test arranged ( in over a week’s time) but also have my rescheduled 6 monthly PET scan on Thursday this week and review with my plastic surgeon on Friday. My symptoms - even though A&E last week said bloods, XRay, ECG, even a CT scan were fine - are:
- body feels cold, especially in bed in the early hours
- very fatigued a lot of the time
- drooling ( saliva)
- feeling a bit woozy in crowded places ( hence dread the hospital visits later this week)
- very thirsty a lot of the time but……….….….
my sats are fine, my appetite is fine. I just basically don’t feel myself and do wonder, since they haven’t been checked for such a long time, whether I have a thyroid or adrenal issue. Thanks again for any advice or shared experiences. Thanks !
