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1:51pm August 18, 2014

Question: Low Cortisol Levels and Steroids..

courtingchaos-tx:

   Okay, question for anyone with adrenal insufficiency, Addison’s Disease, or who has had low cortisol levels after a flare or while on steroids….

   I’ve been going to an endocrinologist for the last 2 weeks based on my GI doctor suspecting I’ve fried my pituitary gland and have an adrenal deficiency.

   The endocrinologist did a ton of blood work the first week but couldn’t get a great read on my cortisol levels because I’m still on prednisone since my last UC flare (but tapering off) and had taken 20 mgs a few hours before my appointment. The second week I was weaned down to 10mgs but didn’t take it before my appointment since she’d told me not to.

   I was sheduled to go down to 5mgs next week and then finally be off the stupid steroids they called yesterday and told me my cortisol level was extremely low at 1.6 and under no circumstances could I go below 7.5 mgs of Prednisone until my next appointment in 2 weeks. :(

   So I don’t get to drop down to 5 mgs next week, and I don’t get to go off the damned steroids… and I really need off the stupid Prednisone because these weight fluctuations and mood swings are kicking my ass!   

    I’ve been miserable for the last 6 weeks, but I could handle it because it was only supposed to be a 6 week course and there was an end in sight. Now they’re extending the timeframe and from what I’ve been reading online I might be stuck on them forever???

   So my question is if anyone else has had low cortisol levels did it end up being a temporary thing? Did you have to take steroids to correct it? How long? And if it wasn’t temporary and ended up unfortunately being something like Addison’s is there any non-steroid treatment available?

  Because I can’t seem to find any alternatives online and am starting to feel pretty hopeless. :( 

My situation is possibly different from yours, because my adrenal insufficiency wasn’t triggered by steroid use.

But I do have secondary adrenal insufficiency, meaning it’s my pituitary gland that is not putting out ACTH, and then my adrenal glands don’t make cortisol.  It’s severe enough that when they tested me, they could not find any cortisol or ACTH in my system.  They assume there was a miniscule amount or I’d have been dead, but I did come very close to dying many times.

Anyway… from what I’ve heard, if you get adrenal insufficiency due to overuse of steroids, you have a much better chance of your system bouncing back and beginning to make cortisol again.  So that should give you some hope, I hope.

I’m going to be on dexamethasone for the rest of my life.  But the amount of dexamethasone that I’m on, is much smaller than the amount you would use to treat an autoimmune condition.  (Of course I may have myasthenia gravis which may eventually mean having to go up to really nasty levels of dexamethasone.  We’ll see.  But that’s a whole nother story.)  So even if you’re on Prednisone forever, it could be on a reduced dosage.

For whatever reason, the dexamethasone doesn’t give me very severe side-effects compared to when I’ve had to take Prednisone in the past for lung conditions and stuff.  Maybe it’s the fact that the dose is low.  I don’t know.

But it’s super important to be on the steroids for as long as it takes for your body to bounce back.  Which may be never.  But it may bounce back.  You don’t know.

In my case they’re pretty sure it’s not going to bounce back because I’ve had this for six years, minimum, and it’s only gotten worse and worse.  But I’ve heard that if your adrenal insufficiency was caused by steroid overuse, there’s a chance you can bounce back.  So hold onto that hope.

But even if it doesn’t bounce back, it’s not the end of the world.  You can try different dosages and different medications and see which ones work for you the best.  I don’t do well on Prednisone and they wanted something longer acting, so they gave me dexamethasone and it’s much better.  My only side effects are insomnia and food cravings.  (Food cravings are only a problem because I’m tube fed.  So I end up eating something by mouth and then having to drain it out of my g-tube to avoid aspiration.  Which makes me feel incredibly stupid for eating it in the first place, but my doctors assure me it’s very hard to fight steroid-induced hunger and they don’t blame me for it.)