OT--adrenal issues?

Were you on prednisone? I haven't had my cortisol levels checked but I find this topic to be very interesting and I would love to learn more.

I got a low cortisol readings from being on pred for a year. I never did anything about it because it meant staying on a low dose of pred for the rest of my life. I "erred" on the side of nature and it worked itself out without intervention, which would have been permanet.

What are your symptoms? I had no symptoms. Did they give you the cortisol function test?

bookworm21 said...
They checked my AM cortisol, which was low. Now they want me to go into the outpatient center for a diagnostic test, where they'll draw blood at baseline, give me a shot of cortrosyn, and then measure the cortisol again.

Yes, I have at least half of the symptoms of adrenal insufficiency/Addison's disease: chronic fatigue, loss of appetite, nausea, vomiting, diarrhea, low BP, headaches. The chronic fatigue is consistent--everything else comes and goes.

I'm not thrilled at the prospect of having to take pred, but I'm trying not to think about it--not point in dwelling when I don't have a definite answer! But, at this point, I'm almost willing to do anything to get rid of the fatigue.

Is there any danger of letting the body heal naturally so that it can build up its own level of cortisol? I don't see any danger in the side effects you are experiencing. Even the low blood pressure (I'm assuming that's what BP means) isn't a big deal. I've had low blood pressure all my life, which can get so low that the nurses have to try several times to get a reading.

After having IBD, I no longer trust doctors and the pharmaceutical industry. I don't think the best answer is to have you go back on steroids.

bookworm - Sorry to hear about your problem.

I was diagnosed with Seconday Addisons Disease a while back, due to long pred use. My AM cortisol was very low and I also had all your symptoms. I have a synachthen (sp) test, which involved an injection and then blood being drawn every few hours for 8 hours - so you will have to spend a whole day in the hospital.

After the diagnoses I was moved from pred to hydrocortisone (which is what addisons disease sufferers use - NOT PRED!!) this is due to the long half-life of pred compared to hydrocortisone. You should not be on pred as you would have a high level of steroid in your system all day every day. Not good. But, but with HC you would need to take it a 2 or 3 different times of the day - to mimic the bodies natural cycle.

After a year, I was able to come off the HC completely, and my addisons disease was gone! My endocrinologist said my adrenal glands were able to "wake up" as there were periods of the day when I had no steroid and they had to work themeselves. This wasnt the case with pred, which is why I had to come off it.

They will also give you an emergency cortisol injection to carry around with you, incase of emergency. They will train you in how to administer it.

But you may not have it! Let us know how you get on.

Best wishes and take care

I see you are on Remicade. Adrenal insufficiency could be a side effect of the Remicade:

http://www.ehealthme.com/symptom/adrenal%20insufficiency/R

It's a very small percentage, but I wouldn't rule it out.

Correlation does not equal causation...sure, it's possible that Remicade could cause Addison's BUT once you have one autoimmune disease, the risk of getting another one is much higher. Who knows.

Thanks, barnsbury. I have the test next week.

bookworm21 said...
Correlation does not equal causation...sure, it's possible that Remicade could cause Addison's BUT once you have one autoimmune disease, the risk of getting another one is much higher. Who knows.

Thanks, barnsbury. I have the test next week.

Sometimes I wonder whether or not it is easier to get another auto-immune disease is due to the meds.

I have low cortisol levels. no I do not have addison Disease. This is from the stress of being sick all these years. I am treating it with vitamin theraphy and it is slowly going back up.

I see a Functional Medicine doctor which I highly recommend anyone with any kind of disease do. She was the one to have actually found this. My levels after my last surgery in Aug 2010 were almost at 0! I take zinc, vit C, and upped my vit D levels. I was always tired and now a year later I fell great! Best in years! and that is with only a small increase that I had measured before the summer. I just got paper work for more testing and will let you know how it is now. BTW, I too have low BP.

Well, the cortisol stimulation test came back normal. However, my baseline was lower--3.2. The endocrinologist wants me to start hydrocortisone...I don't know how I feel about this. I would love to feel better but don't want to be on hydrocortisone long-term or have trouble weaning off of it (the nurse didn't know any specifics of the hydrocortisone dosage).

So I spoke directly with my endocrinologist...the third cortisol test was low as well. Anything less than 18 in the morning is abnormal--I've had 8.6, 3.2, and 8.2. I might have to get more testing depending on the ACTH test results. She said that if the ACTH test comes back abnormal, then I'll definitely have to go on hydrocortisone. I think she said 10 mg in the morning and 5 mg in the afternoon.

Peace&Harmony--have you read Dr. Jefferies' book?

susan53--how did your testing go?

Does what my endocrinologist says (10 mg in morning, 5 mg in afternoon) align with Mck Jefferies recommendation? From the excerpts of the book that I found online, it seems to. And my endocrinologist did use the term "physiological dose" and that it would NOT be a "pharmacological dose."

I'm still worried about being on hydrocortisone long term--when I was on steroid rectal meds a couple years back, it made my skin break out! If rectal meds can do that, I don't even want to know what oral steroids could do!