What Do I Need?

Trying to sort out what I actually need for the upcoming endo appointment.

First, check out this case study of a soccer fanatic with Addison's.

"Previously she had enjoyed excellent health and participated in high intensity training for extended periods. Within three months even leisurely walks on flat terrain resulted in severe fatigue and intermittent chest discomfort."

The exercise issues described resonate strongly with my situation. Only I don't test as well as that patient did--they were pretty easy to diagnose.

My feeling is there's something wrong with the HPA axis but, while stress dosing is vital, I probably don't need steroids everyday. Whether I will ever fully recover remains to be seen--I tend to think I'm developing permanent Secondary Adrenal Insufficiency due to the prolonged and varied insults to my system. As I've stated before, this has been the most severe and dangerous suppression yet.

It has been different in many ways:

-Diagnosis and treatment was delayed, I believe, almost fatally. I truly thought Medicine was going to kill me last year (2010).

-Compounding problems. While I was suppressed and without treatment or diagnosis, I lost a lot of blood, one point shy of anemia, and had the stomach flu. All without a properly functional stress response.

-Had an adrenal crisis.

-I have not been able to stay off steroids for any length of time.

-Energy for exercise has been an ongoing issue that is not resolving.

My goals from this point are:

1. To stress dose when appropriate, possibly even including exercise.

2. Cross fingers things resolve and the need for steroids becomes obsolete.

3.If things don't improve or get worse, an ITT or OMT would be a good idea but the odds are pretty low of a physician actually ordering those tests, which leaves me hanging. I am not sure how to proceed on this point.

I suppose the good thing is, if this is developing Secondary AI, it will eventually be bad enough to ace all the tests that come before an ITT. I just need to survive until that point.

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ER Doc

The ER doc and I had the following conversation last week:

Doc: "You should have taken steroids prior to the surgery."

Me: "My endo doesn't support that. They say I'm normal and don't need steroids."

Doc: "Not according to all the medical literature I've read."

Me: "I know, I've read it too."

What do you do when your endo follows one school of thought while your body follows another? I bring stuff up. I try to challenge thinking, but it doesn't go anywhere. We're stuck in this pattern of 'you're fine, but here are some steroids.' What is the end game of this pattern? Where's the plan?

My body is not going to dissolve into the ether. It's not going to stop annoying the sh*t out of me and the endo anytime soon. So, I don't know. Maybe we need a new approach?

Taper to date is as follows:

Monday-30mg HC split dose but all before noon (helped a lot, but felt like a little too much)

Tuesday-20mg HC no split

Wednesday-Holding at 20mg, no split.

Thursday-Down to 15mg, no split.

Sunday-Aiming for 10mg, no split.

Hoping to be steroid free by the end of next week.

Sooooo tired.

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Next Move

I'm really loopy right now. Just so you're warned. If you're wondering why I blog when I'm so impaired, it's because I'm no good for anything else.

I'm wiped because the endo appt stressed me out. So now the adrenal glands ache. For the first time in a long time. Which is disheartening.

My only frustration with my medical care is that it seems no one really understands the physiology.

According to the endo, I still just have steroid withdrawal preceded by suppression.

I don't agree. I think the suppression has been much more significant than doctors realize.

There is such a marked shift now that the HPA axis is waking up. My entire body has changed. It's not withdrawal, I can feel literally feel the difference.

The suppression was so poorly handled last year and the lack of any follow up testing once I weaned the first time, compounded things. There's a legacy here, a potent one and it just doesn't seem to factor in to my care.

However, ultimately, despite different points of view, things are progressing. The endo did the most intelligent thing yet in this debacle and that was switching me to Hydrocortisone with its shorter half life. Best move yet. Going to add that to my steroid playbook for future reference.

I requested a standing order for an am cortisol blood draw and, surprisingly, got it. If I tank again, the goal is to get the blood work done before starting steroids so the doctors have objective proof that can't be dismissed as easily as I have been to date.

The big question now is, will I be able to stay off steroids once I'm done weaning (which should be sometime in May if things continue to go well)? Exercise is a problem. Stressful situations are a problem. Just run-of-the-mill whitecoat anxiety can usurp the rest of my day. (How lame is that?)

The other big question, if I tank and the test comes back as low cortisol, what do I do? Is it time to travel and see doctors who do adrenals all day every day? Or do I chalk it up to the HPA axis still being in recovery mode?

It's hard to judge because, as I've mentioned before, all the literature says you updose for illness or surgery for up to a year after HPA axis suppression. The implication is just regular old stress or a hard work out should be okay. What does it mean that it's not okay for me?

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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.

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Note to Endo

I hate sending emails to doctors. It seems to easy too cross the line into being a really annoying patient via email. I find I am unsure of when it is or isn't appropriate to email a physician and only one has ever invited me to do so (the weight loss guy who decided I didn't have asthma right after I got out of the hospital ...for asthma). And I never quite know what to say or how to balance the business with the social niceties. (Hmmm, maybe this is a good question for Dr. D.)

Well, the endo emailed me via the hospital's interface about my blood work, but didn't actually follow through on some things we had discussed during our appointment.

I waited a few days to see if they responded to my fax or not and if they would comment on blood work that came in after their initial message.

Nothing.

So today I sent the following note...

"Thank you. Regarding the thyroid antibodies, we had discussed that the results would indicate if I would need to retest every year or every six months. What testing schedule would you like me to follow?

As for the hair loss, if the TSH is fine, do we assume it's related to the adrenals and will it come back as my adrenals finally get their act together?

Lastly, did you receive a fax I sent? If not, don't worry about looking for it. Simply put, I've had some scary issues with the adrenals. Not just fatigue but low blood pressure (90/50), the worst I've been since March. I am now trying alternate day dosing of 5mg with the idea of tapering down to 2.5mg, to see if a slower, alternate day taper is more effective at getting me back on my feet.

If you want me to handle this differently, please let me know.

Eventually, I will be calling for refills and I want to be sure you know what I've been doing over here.

Thanks for your help, I really appreciate your assistance with all this.

Regards,
POP"

So what do you think? Crossing the line? Professional? Did I do okay? I really don't want to piss off my prednisone supplier, you know?

I don't like having to chase people down either, but this seems to be the norm in medicine today. Zero follow-up. The only docs I have that do any follow-up are the dermatologist and the OB/Gyn who was almost hounding me to come back in for some additional testing that was botched earlier.

Ugh. Why can't this be easy?

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