Truth

I am holding steady at 3mg the same way a rock climber hangs by one hand after their ropes have split and the edge of the cliff looms large.

We'll see if I can pull this one off or not.

And for future reference, when your toddler tells you they are eating your soup, don't get too excited.

They are not eating your soup.

They are feeding it to the dog.

Along with a stick of butter.

So doing the happy dance in the other room because she's eating soup packed with vegetables is kind of irresponsible parenting.

Three year olds are a danger to themselves and others. They know just enough to get the lid off the probiotics supplement container, but not enough to realize eating them all may result in unpleasantly sh*tting their brains out later.

Your husband will not know what to do and when he calls you at work to ask, you will tell him it's probably fine, but call Poison Control just to be sure. And he will ignore you because why no one will ever know, however, your banshee shrieking upon uncovering this oversight will certainly ensure he doesn't do that again. Or so you hope.

True story.

Parenting: The only job you'll ever love with all your heart and never be good enough for. The performance reviews are bruuuutal.

True story.

Okay. Moving on. Let's answer some questions from yesterday's post.

Ezekiel asked: "If, hypothetically, your cortisol production doesn't wake up again is there an alternative to pred?"

Yes, but I don't know what the doctors would actually end up prescribing. But yes there are other steroid meds, some are considered better than prednisone. More detail on this when I answer the next few questions.

Anonymous wrote: "I think you're trying to taper too fast. I know most docs say to drop every two weeks, but for some of us it appears we are much, much more sensitive to the drops and the side effects of tapering make it soooooo hard to get through the days. I really think you need to stay at each dose longer and also go down by smaller amounts than 1 mg. Also, I've read that if you use your rescue inhaler more than twice a week, your asthma is not well controlled. "

You know, all the pulmonologists and endos I've seen all subscribe to the 5 day taper paradigm. I have heard of longer tapers, which is what inspired me to stick at 3mg for two weeks, but no actual medical professional has ever advised this.

As for the asthma, eh. It's annoying and unpleasant, but not impressive. I've seen worse. I'm not too worried about it. Once I get my adrenal glands going again, I will be willing to add in more asthma meds like Pulmicort, but I really don't want to muddy the waters with more steroids. They say the inhaled steroids don't have the side effects of the oral ones and true, it's not as bad, but I still react to them.

Yes, I am a special snow flake.

You may all applause. Delicately though, I am sensitive.

Edited to clarify: The asthma is the same no matter what I do. The amount of breakthrough symptoms and use of rescue inhaler has been steady so what's the point of more meds? I've done it both ways, there's no difference.

Tracy wrote: "Mayo's endos in Minnesota do adrenals just fine in person - we've seen them for secondary adrenal suppression among other things. In fact, Mayo has one of (if not the) top experts in the world in adrenal tumors.Why aren't they using hydrocortisone instead of prednisone? "

Either I am mis-remembering the info on Mayo or was actually on some other medical system website or didn't see the info you found. Or you got lucky (pass some of that luck over would ya?). The fatigue does kind of eat my memory similar to new parent sleep deprivation.

From what I have read, the steroid used for Secondary Adrenal Suppression varies. It can be either HC or prednisone. Several pieces of medical literature I've read prefer prednisone over HC for SAI but no one ever says why, which is kind of odd since HC is supposedly superior.

Badturns wrote:I'm certainly not pushing the Mayo Clinic because I have no experience there, but I went to their endocrine site and looked at the doctor's profiles http://www.mayoclinic.org/endocrinology-rst/doctors.html There are some with adrenal function/dysfunction listed under "interests" and in their list of publications. E.g., this guy: http://www.mayoclinic.org/bio/10024956.html

Yeah, my memory of what I saw or didn't see where may be flawed or I may have missed something.

However, I will say I'm wary of 'pituitary centers' which is where some of the endos who do adrenals end up. Cushings patients often report cold abuse and lack of care when they seek help from those specialty centers--these are people who actually do have tumors on the pituitary and the pituitary centers are refusing to test! They get their diagnosis from a 'not pituitary center.' It's that f*cked up. Not saying it would happen to me, but, given my record thus far, I am really good at finding doctors who could give a sh*t.

Honestly, I feel awful for endocrine patients. The stories I read online are heartbreaking. People are ignored, belittled and mistreated...by the uber specialists, the doctors who are supposed to be the endgame of medical perfection. It's horrific. Believe it or not, I am nowhere near as bad off as some people. There are people out there who have proven tumors on their pituitary and the doctors still don't care. Isn't that crazy? Shame on those doctors.

Run2WinthePrize posted a comment on the Methacholine Challenge test and I just want to respond here too so she is sure to see my response.

1. MCT negatives have about a 10% error rate from what I remember so with all your symptoms I would definitely go to that other lab for another MCT to rule out operator error or equipment failure. A negative MCT is not 100% accurate and someone has to be that 10%, you know?

2.I hope you find an answer soon especially since you are so symptomatic.

And that's it. Did I miss anything?