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.

Why I Care

It's just a cold, the average person would say.

No, it's not.

Sick means stress which is bad because my body forgot how to make cortisol, which you need for stress.

So I am back to where I might have to increase the prednisone dose just to cope with this cold.

Why should anyone care? It's just a few lousy milligrams, right?

No, it's not.

Spend some time with Addison's patients and you'll fast learn why.

Disability.

Unemployment.

Osteoporosis leading to broken hips and a degenerating spine.

Bad reactions to steroids.

Never finding the right supplement dose.

Never finding a doctor who knows how to treat adrenal insufficiency.

Actual doctors with Addison's don't fare any better than the average lay person.

The diagnosis is the easy part, the impossible part is living with adrenal insufficiency. It's nowhere near as amenable to treatment as the medical textbooks make it out to be.

If I don't get the adrenals working, the future is uncertain. I will continue to struggle with finding adequate (forget good) medical care, employment may be impossible and my list of medical issues will grow even longer.

There's nothing simple about this cold.

Member of the 1% Club Several Times Over --Where's My Prize?

Saw the primary doc. They are listening. I can see the wheels turning and I think I'm being taken seriously.

They asked if I'm exercising. Everyone asks this. Somehow my description of the fatigue tends not to compute the first time around.

I snorted at the question. "This is it. This appointment is ALL I will do today. From here it's all nap and resting. I haven't exercised in 2+ weeks."

Although I did end up taking the toddler out for a burger and to the playground. It about killed me, but I am committed to not sucking the life out of my daughter's childhood. Then I came home and threw out more food I am too tired to cook and the hubby brought home take out. Again. After which, I took a loooooong nap.

The other exchange, has me kind of kicking myself. Look, I have read and read and read EVERYTHING I can find on adrenal crap. Studies.Textbooks. Patient experiences.

EVERYTHING. I am the Queen of Adrenal Factoids at this point. Where do I audition for Jeopardy: The Patient Edition?

When the primary doc was confuzzled on why I would be prescribed prednisone as it doesn't contain the mineralocorticoids (hope I spelled that right), without thinking, I blurted out 'This is probably secondary adrenal insufficiency.' *face palm*

See, you don't need the mineralocorticoids if it's secondary adrenal insufficiency because, supposedly that capability is still intact in the adrenal glands. (On a side note, I also read that because of this it would be very very rare to have an acute adrenal crisis, but I would like to see more than one source on that before I take it as gospel.)

(And of course being a lowly stoopid patient, I could have all this wrong.)

I liked that they questioned it. That they were thinking primary adrenal insufficiency, because I do think I need some testing--whether it's damage from sustained prednisone use from the ages of 15 through 30, or the fact that the first time my adernals tanked it went undiagnosed or other high medical weirdness, something certainly seems off. The endo is planning to do that testing as far as I understand.

Anyway, I wanted to kick myself for saying anything at all. Fortunately, I don't think they took it the wrong way. They actually apologized for me having to go through all of this, which was a real kindness, I thought. I really appreciated it because my life has SUCKED lately--the bright spots have been hard to find. They also said I am that 1% who has issues with suppression.

As if I've never been an outlier before. Puhleeze. As far as outliers go, my health is a total 'slore'* I should get 1% tattooed somewhere. Maybe even trademark it as my brand. It seems to be my personal percentage.

The goal at this point is to get the primary doc all copies of all paperwork--past, present, future--related to the adrenal stuff. I am all for that. The more doctors who know this about me, the better. I am learning the painful lesson of having just ONE doctor know serious medical stuff about me. When they left town, I was left high and dry.

I won't make that mistake again.

*Slore = slut + whore. Courtesy of Olympic skater Johnny whatshisname who recently described Olympic gold medalist Evan whatshisname thusly. The word has since stuck in my brain.