Hello,
If anyone out there has adrenal insufficiency AND is on immunotherapy, how do you know whether to take extra hydracortisone or not for fatigue?
I got officially diagnosed with a broken adrenal gland 3 months ago but have been on 20g replacement hydrocortisone already for 7 months. I get debilitating fatigue for a couple of days on a weekly basis. I find it quite shocking.
At my last appointment with the endocrine consultant, she just shrugged and said 'Oh, that's your cancer treatment fatigue'. But I wonder if I shoudl be on a higher dose (25g)? Or whether I should be up-dosing on bad, fatigue days?
I feel like I have a good deal of psychological stress in my life because of Stage 4 cancer diagnosis and this affects maybe my need for more cortisol? On the other hand, I do have good resources to deal with the stress (therapy, meditation, rest, pacing).
I'll definitly ask all these questions at my next endo appointment but I'd appreciate knowing other people's experience.
Also let me know if you think there are any other questions I should ask my endo consultant.
Warm wishes,
Dots
Hi Dots
I can't help with your question but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
Hi Dots.
I’m also Stage 4 with adrenal insufficiency, however my immunotherapy course has been completed.
I didn’t have any extreme fatigue, although I did feel a bit tired in the couple of days after treatment in the early days.
My endocrinologist explained that I only need to increase my dose if my body is under stress - either physical (extreme exercise or during illness requiring antibiotics, etc.), or psychological.
Personally I’d perhaps increase the dosage slightly during the high-fatigue days, just to see if there’s any improvement. Please note however, I’m a surveyor not a clinician, so this is very much what I’d do rather than medical advice!
How often do you see your endocrinologist? I’m reviewed annually, however have an email address where I can send queries, and I usually get a response within a couple of days or so. It might be worth emailing them (if you also have a contact address), to see what their response is to the thought of increasing the dose on a temporary basis during fatigue events.
In terms of questions, I think you just need to make sure that any other relevant hormone levels are going to be checked on an ongoing basis, which I’m sure they will be. Some of the immunotherapy side effects take a time to present, so it’s important that you are monitored beyond the end of your immunotherapy period.
Hope the above is useful, and not too confusing!
All the best & good luck with your treatment going forwards.
Hi Dots,
I’ve been Dependent on 20mg Hydrocortisone daily since November 23 after Liver Hepatitis damaged my Adrenal Glands. The Sick day leaflets are confusing but I was told when I’m feeling low with extreme fatigue and think I may have a bug, to take an extra tablet first thing.
I’ve worked out that if I manage to do some jobs outside like clean gutters last week, cut the lawn etc etc I need to rest the following day or I’m knackered for a few days. I would usually then double up first thing but personally I don’t always as I try to fight it.
I take 10mg tablet first thing then half a tablet around 11am then the final half around 2pm.
as we self manage our bodies it works for me. I am due another test to see how low my levels are first thing soon but other than that they haven’t been in touch.
Blood checks this week ready for next treatment revealed cortisone levels good so the tablets doing their job.
if I have doubled up then I will only do so for 2 days as my body seems to recover quickly.
hope this helps.
Mole.
Hi Dots
I'm on immunotherapy and suffer with adrenal insufficiency. I havent got to see an Endocrinology Consultant but was referred to a specialist nurse. She put me on 10mg of penisolone every morning and instructed me on how to inject myself with hydrocortisone. Thankfully I have not had to use this yet. If I feel slightly off I was advised to take an extra penisolone and this appears to buck me up. After my treatment day I usually have a couple of days fatigue but this past month, this did not occur. My cancer is stage 4 but I have not let it dictate my life. Everyone is amazed how positive I have been. I was advised to wear a bracelet to inform any one of my dependancy on steroids. Hope all goes well ..... Chris
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