Paging Sangye's Adrenal Glands

[Sangye]

I was stuck at 2.5 mg pred for about 2 or 3 years but couldn't taper below it without my adrenals shutting down. I didn't need to be on it to control Wegs. In 2011 I started seeing an endocrinologist at JHU who switched me to hydrocortisone, which allows us to do adrenal function lab tets periodically. She said it can take a year or so for the adrenals to come back online.

The main test they do is measure the cortisol levels in the morning (called the AM Cortisol). Normal is 12-15. Last year mine was 6.5. She said my adrenals weren't working well enough yet to start tapering the HC, but they were working well enough for her to feel hopeful that they might come back fully online given more time. We just repeated the test last week and it was 9.8. It needs to be a 12 before we can start tapering, so we'll repeat it in 6 months.

For the past several months I've added a low dose of an adrenal support nutrient. I know that's what is helping, since it actually heals the adrenals. (And no, I'm not going to share the name of it. It can be VERY dangerous to take this without proper supervision by a holistic doctor)

I know I should be really excited about that 9.8 but I've been disappointed so many times in the past that I'm feeling rather cautious about celebrating. It's ridiculous, I know. The past has nothing to do with the present. But still.

[drz]

Best wishes for success. I understand your cautious attitude since the past cannot predict the future but it is often the best predictive indicator. Your past indicates an 50% increase in Cortisol which is now your best predictive indicator that you will continue to have increased levels. So Good Luck and stay the course.

[mishb]

Come out, come out wherever you are.........Sangye wants you to come out and play

It's about time they started to play the game..........no more hide and seek for these little buggers.
Six more months that all you need......yep this will be your year, I feel it in my bones.........and joints, and sinuses (you get the idea)

Fingers crossed for even better numbers in the next 6 months

[rif]

Hi Sangye good luck in your search for the adrenal glands, the numbers appear to be going in the right direction

Rif

[Dirty Don]

Sangye, your adrenals called me, they said they're getting ready for a coming out party...SOON! Hang tough lady!

[pberggren1]

Ah, it's only human nature to think this way Sangye. I really hope you can get to 12 and get off of HC totally. That would be so sweet. But what I really want for you is to be able to live a life more like what you had before you got sick.

[Sangye]

Thanks everyone! Convincing my adrenals to play seems to be like luring a frightened animal out of the bushes.

[jola57]

I know how you feel, I'm stuck with 2mg and afraid of dropping it to 0. I might brave it after comming back from Europe in July. I hope by then you will be weaned off completely and give me some pointers.
adrenals, be good to Sangy and keep growing in numbers.

[Jaha]

Sangye,

Good luck to you! We have to take every little victory we can, I know it is hard to see, but baby steps is what they told me in the begining and is hard to remember.
Jana

[annekat]

Thanks for sharing, Sangye... a lot of us can use more understanding about our adrenals and what might or might not happen when we try to get off pred. And I hope things keep going in the right direction.