Secondary adrenal insufficiency., can it go away?

[dlp5]

Hi all. Can secondary adrenal insufficiency go away? Ive been assuming i have addison's because i have adrenal insufficiency but have now realised it might be secondary as ive been on steroids a very long time ive started emergency treatment yesterday and im waiting for an emergency appointmet with endocrinologist. Ive been telling people that i have addison's and ive just realised it might not be or that it may go away. I had got my head round it but im thinking perhaps ive jumped the gun. I had resigned myself and everyone else to a lifelong condition. I dont care myself as long as i get treated!!!! Any advice?

[Hidden]

The short answer is that it can't "go away" however there is a chance that by weaning off steroids might cause your adrenal glands to "wake up", however the longer they have been suppressed the less likely they are to start working again. People who have had surgery to remove either a pituitary or adrenal tumour may find that with weaning down the steroids their glands may stat working again, also people who have had secondary due to long term steroids use, like you, may be able to reduce steroids too. I am now 4 years post op following removal of a pituitary tumour & my pituitary gland has not woken up so my adrenal glands have atrophied so I am now steroid dependent for life, my last reading was just 11nmol/Ls when it should be nearer 500nmol/Ls first thing inn the morning!

[elicarol]

In 2002 I was told I have thyroid and goiter and on levothyoxine. I never felt right two years laterI saw a new doctor and did testing for 18 days 7 days aa week and found out I had adrenal problems. It is called pheochromocytoma which is a tumor on the adrenal gland that produces hormones I had adrenalectomy and felt ok for about 5 years and was also told not to have anyone give me steroids. My doctor another one has been testing me and now thinks I have cushings without levo or on levo my test are same they raised my levo and started heart palpitation so for 1 year I haven’t taken any meds now I have cortisol high testosterone and T3T4 high I am so drained mine all started with tumor on adrenal and hard to diagnose I was told he thinks I have cushing now. who knows what’s really going on

[Hidden in reply to elicarol]

Hi I'm sort of assuming that your other adrenal gland is producing cortisol so you don't need to take replacement steroids? If your doctors think you now have Cushing's where does he think the excess cortisol is coming from? Does he think that you have another tumour in the other gland, or it's producing too much cortisol because there is a tumour in your pituitary gland?

[Teresamarie]

Hi dip5

Since you’ve been on steroids for a very long time my guess is your secondary adrenal insufficiency will not go away. Sounds as if you’ve found yourself in some sort of emergency which can cause many problems for those of us needing a loading dose for events that stress the body. I have secondary adrenal insufficiency due to a pituitary tumor. I also have central hypothyroidism both of which were caused by the surgery I had to remove the tumor. Your doctor should have gone over the importance of hydrocortisone replacement treatment.

Good luck to you.

Teresamarie

[Hidden in reply to Teresamarie]

Snap!

[Davidbn1]

Hi yes I was diagnosed with the same condition about 10 years ago, the doctors don’t really know why but their best bet is because of opioid use long term. I have to take hydrocortisone steroids 3 x a day and up my dose if I’m unwell in any other way. I have ended up in hospital twice recently because my cortisol has been so low. Also when you go to accident and emergency about anything you must tell them you have this condition but even most doctors unless they are specialists don’t seem to understand it or it’s potentially life threatening consequences. As far as I know you will be on steroids for life.