Low adrenal function -- what now?

I don't have advice, but I am very sorry!! I am at 7.5mg and very anxious to finally be off of pred in a few weeks. I am at my highest weight, just like I was last time, and I am tired of being swollen and fat, not sleeping well, and well...all of it. So being stuck really stinks.

How did you find out you have low adrenal function? And what about just doing a regular taper, will that not work? He didn't tell you what the plan is from here?

Would you consider trying acupuncture? That could help. Also, I have read Vitamin C is good for adrenal support. And I know that my DHEA levels were very low when I had bloodwork done last-which was attributed to pred use-but using a DHEA supplement could also be beneficial if your levels are low.

I wish I had more advice. I hope you can find a way to get off of the steroids for good!!!

Oh, I have no symptoms, just low energy. I can't work out the way I want to. I have this huge roll on my stomach, which can be one of three things or all, low adrenal function, prednisone, or Zyprexa, my mood stabilizer.

I'm frustrated with my new doctor. Before I met him I was a week away from tapering. Then he put me on this long roller coaster taper. I wonder if the extra time on pred triggered it. Sadly, I've been on pred, for 7 out of the last nine months.

Have to say, I have a great gut now, just not evidenced by my expanded belly.

Thanks for the suggestion of DHEA supplement.

Any other ideas would be appreciated.

I saw the GI today and he said I'm way deficient in adrenal function such that if something stressful comes my way that requires a lot of adrenalin, I'll go into shock and die.

He wants me to go up from 7.5 and 0 and I just don't want to. He said go up to 7.5 and 2.5 and I sort of agreed.

I'm really heartsick over this. He's referring me to an endocrinologist. How can the problem end? Why aren't more people getting this? My last GI let me get off prednisone and all I remember is a lot of anxiety and the return of my symptoms. I notice I handle stress terribly. I wonder if that has anything to do with adrenal suppression.

I hope this will invite more people like Clicky to give me their experiences.

Ellen -
What a bummer this whole thing is!
But, as you said, you've got a good gut now, and that's sure a good thing....
I am sure there is something they can figure out. I know I sure get tired of the endless parade of docs and referrals, but - go girl, you'll get to someone who can help with this.
There has got to be some way.
I was on pred for 2 years... and came back to be normal. I wasn't the best advocate for myself then, and no one suggested an adrenal function test..... I was doing HIV counseling at the time, and took on a few alternative things from our support group - I'd sit and massage or lightly pound the area where I thought my adrenal cortex might be.....goofy, who knows, but I felt as if I was proactive, best I knew.

If you're worried about getting into an accident and not having your adrenals kick in, maybe get a medic alert bracelet to wear while they figure this out....?
My word to you is, your gut is good, that's wonderful! - hang in there!!!

Ellen, I'm bringing this back because I've been doing some research on DHEA and thinking of taking it, along with other adrenal support supplements.

Have you tried it?  Has it helped?  How was your adrenal function tested? 

I haven't had an adrenal function test but I've had a marked improvement this time around with prednisone when I was at 20 mg or below.  I don't gain weight, I sleep well, and I feel great.  My UC symptoms have improved tremendously.  I'm afraid to say the "R" word, but this is the first time in 2 1/2 years that I have not been afraid to leave the house without knowing where the nearest bathroom is.

I also have gone gluten free, am meditating and cutting down significantly on sugar (pretty hard to give it up altogether, though!) 

Since I have a thyroid cyst, too, I'm suspecting that some of my problems may be hormonal, and I'd prefer natural support to traditional meds. 

Any feedback from anyone is appreciated.   

 

Hi Ellen-

I had low functioning adrenal glands after I came off prednisone last year. I went to a naturopath who prescribed licorice extract. I would definitely try it as it seemed to work for me.

Saw a real endocrinologist, not a GI who plays one on TV.

Turns out I'm OK. He says my adrenal function will come back if I taper off pred very slowly. And my verdict of Pred for Life from my GI was thrown out of court.

I still am going to take the cortisyn study test to see how I'm coming along.

Feeling great. Think yoga is helping the stress issues caused by low adrenal function.

I'm a happy camper now. You always want to feel like you are moving forward.

There's always the tahoma clinic, if you want some natural support for your adrenals. It's probably a good idea for anyone who's ever been on pred. I believe they do phone consults.

Hi Ellen

Sorry to hear of your recent problems with your adrenals, but glad that you have also had some good news.

Firstly, can I say you are lucky in that you have a GI who actually bothered to check your cortisol before tapering you off the steroids.  The vast majority do not, including mine. And judging by some of the comments made in this thread, a lot of forum members have GI's who don't mention this extremely important subject.

I was tapered off pred countless times over the past 7 years, and got horribly sick each and every time. Not once did anyone mention adrenal function. I demanded a test, and like yours, I discovered it was dangerously low.

Firstly, being on pred can affect the results of a cortisol test. But, an endocrinologist will take this into account.  I was diagnosed with Secondary Addisons Disease (as you have been), and was switched from prednisone to hydro cortisone. I have been on this for 5 months now, and a recent Day Curve test indicated my adrenal glands are starting to wake up.  This would never have been possible on pred.  Pred has a MUCH longer half-life than hydro-cortisone, and it stays in your body for a long time.  Due to this, your adrenals do not get a chance to come out of hibernation.  SO, it is vital to move off pred and onto hydro-cortisone.  What dose are you on now?  A 9 hour day-curve test will determine the correct dose for you. This is a standard test that all endocrinoloigists will perform on patients in your position.  Too much HC and your adrenals will not wake up.

I was given an emergency hydro-cortisone injection to keep at home in the fridge in case of emergencies. 

Your taper of 7.5mg and 0mg of pred, is what I used to do, for years.  It is a complete waste of time. For people on short courses of pred, it is fine.  I was on pred for 8 years - so it was definately not fine.

If you have dental work, etc, you need to take at least double, or 3x, the usual amount of HC on the day and for the following 3 days after any procedure. As you won't be able to produce the increased level of cortisol on your own.

But, secondary addisons disease is reversible, as you have already been told.  I have already reduced my HC from 15mg in February to 10mg now. You should bear in mind that HC is much less powerful than prednisone.  It is roughly one quarter the strength of pred.

You will be fine!  It's just the taper will take a little longer, but it's worth it, if it means you avoid a flare-up.  I only wish I knew all this years ago!

Hope this helps,  Take care

Hi Ellen

The symptoms I got were:  Extreme nausea, headaches, night sweats, depression, weight loss, extreme lack of apetite, low blood pressure, debilitating fatigue, skin irritation, dizzy spells. The list went on.

GI's I spoke to, all dismissed these symptoms as being IBD related.  But, I knew something wasn't right.  I was actually labelled a hypochondriac!

 

My endocrinologist did not mention I should have an injection at home - it was the nurses who suggested it. So, they gave me a brief training session and gave me one to keep at home.  You don't really need one (it is of more importance to primary addisons disease sufferers, who have no adrenal output at all).  I often travel, and thought it best I have one.

 

I have spoken to many people, and it seems to me, that endocrinologists are generally rubbish at what they do. Mine is terrible. You have to ask and prompt for everything! It appears yours is equally bad.

 

But, I am amazed that your endo has not even realised you should be on HC and not pred!  That is really basic medical knowledge. You need to speak to him and find out why he is content to keep you on the wrong medication, namely pred.

 

Our medical problems are worrying enough.  We don't need second-rate doctors to compound our woes.

 

Take care

Did you just switch over to hydrocortisone while on pred. You can just do that and it's OK?

I had adrenal fatigue- my Dr put me on Entocort. Its to early to say if I think its working, Im still kinda tired
but it seems to be getting better. Its Hella expensive.

Carlie