Hi i was diagnosed with addisons disease in 2006, in 2016 i was diagnosed with cancer.

You should definitely be under a endocrinologist, as there experts in glandular problems,  . What i was diagnosed with cancer my oncologist had to ask endocrinologist about treatment options incase of side effects. 

If i can help please reply, hope they told you if you get ill double your dose   im also on fludrocortizone another steroid  and calcium +D ,for my bones as i can get brittle bones .

Billy 

Thank you for your reply [@Billygoatt]‍  Are Addisons and adrenal sufficiency the same thing  do you know ? I am just very confused

I was very unwell with a chest infection for a few weeks recently and i called my lung nurse after reading that in times of infection/illness then the dose has to be increased and she told me i was most definately not to increase it.  And for 9 months of these 10, i have been taking the wrong dose anyway, Oncologist asked who told me to take that dose and i replied ... YOU. I have the little blue steroid card to prove that that was what was prescribed for me, honestly my tean are a joke.

Im trying to remember what i was told all those years ago, sorry I've alot of thinking going on as have chemo brain, (terrible memory long and short time. 

As far as i can remember,=Adrenal glands make cortisol, without it the body shuts down slowly, hydrocortisone puts cortisol into the body, but the immune system is working less enough to keep you healthy until you get infection, cold and such then increasing steroids increases immune system to fight infection. 

If you have a look at Addisons on Internet you might find more out. Our works secretary, got me pages and pages of information as in those days i didn't use mobile phone or Internet .

Billy i think you should get someone at your hospital to chase up endocrinologist. 

Thanks again for your reply Billy. I did read a lot of stuff on addisons.org i think it was called and when i read all the stuff it made me think that there is so much i don't know about this, hence the reason for me asking on here to see what other peoples experience was.

I am hoping a nurse will come along and maybe clarify for me if i should be seeing an Endocronoligst becuse i really think my nurses or oncologist should have referred me automatically.

Thanks again.

Hello and thank you for your post,

I am sorry to hear you are receiving treatment for non small cell lung Cancer (NSCLC) and that your adrenal glands have shut down.

I have looked to see if there is any clinical guidance about referring someone in your situation to the endocrinology team, and I am afraid to say I cannot find it. However, if this is related to a side effect of the immunotherapy or because the cancer has affected your adrenal glands there is guidance for lung cancer doctors to tell them what to do. I think that a referral may only need to be done if a patient was unwell with adrenal problems and the specialist team looking after them need the advice and input of the endocrinology team.  

I have also looked to see if there is any patient information that might be useful. If this was caused by your immunotherapy (which can sometimes happen) then the information about this from an NHS hospital may be useful to read, you can see it here.

I hope this has been of some help. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday (except bank holidays).

Take care,

Caroline 

Thank you so much [@CRUK Nurse Caroline]‍  for going to the trouble to find this for me, this is very useful and i have downloaded the info to my phone in case i need to educate my Oncologist and Nurses and yes my adrenal gland failure is a side effect of the pembrolizumab and i've been told they won't ever work again so i will be on the hydrocortisone for life.

This is similar to the information i read  except it mentions how much the hydrocortisone needs to be increased by if you are ill which i was.

I was midway through a 2nd week of antibiotics for a nasty chest infection and which i couldn't seem to fight (we all know our own bodies) that's when i called my nurse specialist to see if i had to increase the dosage of hydrocortisone and was categorically told NO. This is why i am becoming increasingly frustrated at the sheer lack of information from my hospital team so this wrong information led me to be on yet another week of stronger antibiotics as well as high dose steroids so my treatment was paused which was completely avoidable.

Sorry for my long reply. Anyway, i phoned my lung nurse earlier and told her how i felt and asked if i was being referred to Endocronology and she can't find anything stating that i will be so she has changed my next nurse led appointment to one with the Oncologist to discuss my concerns so hopefully i will get some proper answers from him.

Thank you again, it's greatly appreciated.

Hi again [@Billygoatt]‍ . Unfortunately my glands have shut down completely and they said there is no chance of them working again even after treatment has ended.