Addison's Disease Support Group

Robin,
From a medical viewpoint, it seems quite a long shot to think that inhaled steroids would cause any adrenal problem. Especially if only used for a short time. What else was in the inhaler? Maybe you are reacting to something else that was in it? That being said, you should research adrenal fatigue and adrenal insufficiency and see if it fits what you have been feeling. If you think it does, a visit to an endo might help sort it out. Has anyone looked at your thyroid function? Other hormone levels? Vitamin D? It never hurts to get another set of eyes and another mind to look at your problems and see what they think. I do not have oodles of faith in endos, or any doctors anymore really, but we have to keep trying. So, if you think you mignt have an endocrine issue, go see an endo. You never know . . . .

Vanyel

Hi Robin. Wow. I just read your post and well, it was like reading one of my own posts!
I DO have AI ( and a dx of CFS that I was given back in the early 90's but even now I wonder if that dx was accurate). Your recent illness is exactly what I just went through! The same issues: extreme exhaustion, weakness, loss of appetite, drastic weight loss, bowel issues....
I agree with Vanyel though about the inhaled steroids..I am not an expert on them but i do not think there is enough steroid in them to trigger something adrenal.
I also agree with Vanyel that you should get some more labs done, like thyroid and Vit D etc.
And yes, it is difficult I have discovered, to find medical professionals, even those that "specialize" in endocrinology, to look at your symptoms and do the right tests and figure it out! BUT there are good doctors out there IF you persist in finding them! I am fortunate NOW as I have found a doctor at a large medical center who FINALLY is treating my AI with knowledge! And I have been dealing with this since Feb 2008!
So i would go get that checked out if I were you!
Good luck and keep us posted!

Thanks so much for your replies!

Yes, it is unlikely for an inhaled corticosteroid to absorb systemically and affect adrenal function. However, the possible adverse reactions to Advair (the asthma med I was on) include things like weight gain, bone density changes, weakness -- all side effects of steroids. This led me to pubmed to research inhaled corticosteroids. A very tiny percentage of people have been observed, especially with fluticasone, to suffer from HPA suppression because of the unpredictable absorption of inhaled steroids. It can present as AI.

I've had a debilittating illness for years but I've never been so sick in my life. For days I couldn't eat solid food, I had to drink ensure and even that was a struggle to get it down. I lost so much weight so suddenly, my legs felt so weak, and I spent weeks sleeping in 3 hour blocks most of the day, and being tired again at night. When I read about AI I looked up the symptoms and they were exactly what I was going through. I immediately tapered the inhaler. At first I felt worse but after about two weeks I started being able to eat little bits without discomfort.

I have been tested for thyroid, Vits B and D, anemia, kidney and liver function, CBC, sed rate, muscle wasting, and a bunch of other stuff I forgot. It's all fine. The ACTH was the only thing on the border.

After during more research like Vanyel suggested, I think it would be unnecessary to see an endo at this point. I'm improving but if I lose my appetite again and weakness comes back very bad, I'll ask to have the labs repeated, and then have a clearer clinical picture about how to proceed and whether I should involve an endo. From what I could find about suppressed HPA (if that's indeed what happened to me, I have no idea), it resolves gradually. I'm still very depleted and my appetite is modest, but I'm at least able to take basic care of myself again! This whole thing has scared the sh*t out of me.

In my research I read about a young women who was institutionalized in a psychiatric ward for psychosis caused by Addison's. No wonder you don't have faith in dr.'s, Vanyel.

@Jeep, I'm glad you got a correct diagnosis, and that you found a Dr. willing to work with you. AI and Addison's sound like trial and error. Best of luck with your treatment and hope you feel well!

Thanks again

Robin,
Has anyone tried giving you some hydrocortisone? It would be one obvious way to see. If it makes you feel all better, then you know. Course, if you take them, it will just slow down the return of your own adrenal function - but if you that sick there really isn't much choice. Anyway, good luck and I hope you continue to feel better.

Vanyel

Hi Robin. Just read your post and again it is so familiar to me. Girl, you sound just like I did a few weeks ago!
First, about the advair, i do take that and and now am going to ask my Duke endo about it. I used to take it very infrequently so i do not think it truly affected my adrenal glands. at least not the way the prednisone did.
My GP actually refused to give me a nasal spray the other day ( nicely of course! he is GREAT! he has been through hell with me and still is not giving up!) because it is steroid based and he does not want to throw that in the mix. So I still use OTC nasal spray which has the rebound effects and I think i will just get the saline one next and get off of that other kind.
Robin, they tested me for Myasthenia Gravis last year. That is a muscle disease that causes weakness. I am not sure the other symptoms at the moment. I did do research at the time..you may want to look at that. The neuro i saw ( she was GREAT TOO! I was SO weak I was afraid to lay down to sleep, and I was SO fatigued I HAD to sleep back then, and she knew I lived alone and I literally was afraid i would stop breathing that is how weak i was. She offered for me to come to her house to sleep! THAT IS UNHEARD OF! She gave me her cell number and you know she never billed me for all the tests and OV's!) I have to see her again actually because the weakness I still have mostly in my left thigh muscle is still really bad and my endo says we need to do a biopsy to find out what it is.
Anyway the neuro did try me on the medicine for MG..and it will only work IF you have it. I took it and it did not work so we rule dout the MG ( Thank God as that is a horrible disease). So like vanyel said maybe trying HC for you and seeing if it helps might not be a bad idea!
i know the appetite issues too..and i was also drinking ENSURE. Luckily I like that vanilla one! But some days that was about all i would drink or consume. I did start drinking vitamin water that my groc store carries...no calories or sugars like some vit waters but lots of vitamins so that is good.
I was dropping weight fast too..6 lbs in 9 days 4 lbs in 2 days...2lbs a day. I have leveled out now and am not losing weight ( in fact I think i am up about 2 lbs right now).
we do not know exactly why I had that setback...my theory is that due to stress at work and the fact that I was on stimulant medicines for the fatigue, i think I fried my adrenal glands. None of my doctors have said that is what happened but I think it may have been exactly what happened. They even said I could go back on the stimulants ( I was on Nuvigil this last time) and I did go back on it and started feeling poorly again so I have stopped all stimulant meds.
It really was only after a few weeks of being bumped up on much higher doses of the HC that I started feeling better.
Now I have to get tapered down off this mega dose! UGH!
Ok I have rambled on long enough...
Keep looking into the cause of what is going on with you..someone will be able to figure it out!
will keep you in my thoughts!

I think pretty much all of us have gone through the same things. I'd gone down to 100 lbs and had pressure sores from the bones rubbing everywhere I sat or laid. No protection at all. I'd used inhaled steroids for yrs. Still am supposed to. But i don't think it had anything to do with my problems. As vanyel had said at some point, your body takes a bit to start functioning again as it did before. Different posts have mentioned abt CFS and it seems that is also something we all have or had. But after 20 odd yrs, my body gave up returning to a state that it could recover. I know it's easy to start looking for answers and thinking you've found it, when sometimes it's something totally different. The exhaustion, the sleeplessness. The muscle wasting, I still have even after steroid treatment for the last yr. High doses of cortef, 60 mgs for the last 3 months. I think when we read a post we all think it's just like us. Hope you find an answer. my body worked then didn't. Off and on till it gave out.