What the Doctor Said

The appointment with the new endo was good. Whether it will yield a solution remains to be seen, but there is forward movement that should push this sucker along.

I am "unusual" in presentation. American culture likes to celebrate the unique, but this is not the kind of unique you want to be. It's never good to be the weirdo patient. Ever. Doesn't end well for the patient. Ever.

The current diagnostic menu is:

1.Autoimmune adrenal whatchmacallit which hinges on whether or not I really have Hashimoto's. Believe it or not, the Hashimoto's diagnosis has been recalled pending further testing. This after two endos said I had it.

Medicine is weird.

Anyway, more bloodletting will hopefully determine the truth of my thyroid once and for all.

2. Steroid withdrawal. Which makes no sense, and the doctor agrees that it makes no sense, given that I weaned and was OFF steroids. However, this is on the table and I will be made to eat it, I assume, if none of the other testing shows anything.

3.Adrenal insufficiency. I believe the doc is thinking primary, but I think it could be either secondary or primary. From what I've seen in AI patients, the symptoms don't follow the textbooks. There are Secondary AI patients with a mish-mash of Primary AI symptoms that aren't supposed to happen.

A cortisol challenge test will be done sometime this month.

4.Sleep Apnea because why I don't know. Just to rule it out on the off chance snoring makes my hair fall out, kills my appetite, causes bilateral burning back pain, strange drops in blood pressure and discolors my skin. I am not thrilled about doing a sleep study. I have an uncanny ability to stay awake outside of my own bed. I hope they have horse tranquilizers.

I am being switched to hydrocortisone, one dose in the mornings, which has a shorter half life than prednisone. The idea is it will be out of my system so my brain has a chance to pick up the slack, a chance it doesn't have now with the prednisone. The problem is, because it wears off faster than prednisone this means I may be okay for part of the day and then comatose for the rest of it.

So not much hope of returning to exercise or being able to even work. After this batch of students, unless something changes, I'm going on hiatus so I can focus on my health.

My tapers probably were too fast. So whoever said I might need more than 5-7 days for a dose to 'take' was right. We are going to do a super slow taper of the HC (assuming further testing doesn't reveal a more permanent or different diagnosis). I'm told it won't be so bad, but I am skeptical that sunshine is going be blowing out of my ass while I'm tapering off my personal version of crack.

The last time I did the year long taper thing, it sucked hairy monkey balls. However, looking back I kind of wonder if the taper was mismanaged as I had Cushings for most of the taper, which means they were over-replacing steroids. That was a very very difficult year. I am not in my 20s anymore, I am not going to be able to just suck it up now like I did then.

I had really hoped that 2011 would mark an end to the suck of sick, but it looks like I'm on the two year plan, which may turn into the three year or more plan.

The important thing is I now have an actively involved endocrinologist who says if life sucks on 20mg of hydrocortisone that they will fix the dose. That is good news, although the cynic in me is harping on the fact that they say that now.... But at least it was said so there's a shot it will actually happen?

As I explained to the doc, the last time I went through this, I didn't have a kid, I didn't have to be functional. Now I do. I can't just be left to twist in the wind, I have to be able to drive, to function well enough to properly care for my child.

P.S. 10mg today felt good and blunted the stress impact of the doc visit. Unfortunately I didn't sleep much last night as the toddler had a bad night and I had a horrific headache that kicked in sometime after 2am along with cramps in my legs. So I feel good, yet manage to still be wiped. Ain't life a bitch.