kickaha | And the verdict is...

And the verdict is...

"Meh, we dunno."

Endocrinologist is 'disinclined' to think it is adrenal, but glucose instead. (His reason? I'm not hyperpigmented. I'm a *redhead* you dolt, we *don't* pigment... and besides, I *have* had a large increase in freckles in the last five months, without sun exposure.)

Despite me sitting there and telling him that every &*%$@$%# doc I've ever seen has said that at first, then come back with "Huh, I guess not. I dunno."

Despite me sitting there telling him that my BP drops below 110/70 unless I drink 1/2 gallon of salt water a day.

Despite me sitting there telling him that I *have* a glucosometer, and that it reads like clockwork, and *does not* correlate with my feeling craptacular.

I swear to god, I may as well not have been in the room. I could have saved two hours, and just had him look at my previous blood workup, since that's all he did.

I think I am 'disinclined' to want to go back to him.

I have a battery of tests on scrip, and I have a call in to find out if the ACTH test listed is an ACTH *response* test, or just yet another goddamned ACTH snapshot, like I've already had two of. If it's the latter, that's useless, and I'll argue until I get the correct one.

Oh, and the followup appt?

Six weeks. Six more weeks of this shit, until he goes "Meh, I dunno" again.

Edit: Okay, so mental fog and irrationality is something else I'm dealing with when stressed or frustrated. Thanks to

ginkgo looking up some of the tests he ordered, it's much more oriented towards adrenal than our spoken conversation indicated. In fact, it's pretty damned comprehensive. Thanks hon, that makes me feel tons better.

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I'm so sorry that you don't feel good about the appointment today.

I think that finding out abut the ACTH test is important before we move forward.

I honestly didn't expect anything else today. This was really a new patient and intake visit more than anything else. Also, Addison's manifests differently in different people, and, since it is so rare, it may take a while before a doctor develops a robust mental picture of what an Addison's patient can look like.

My suggestion for moving forward:

1) Find out about the ACTH test (if it's not the timed one, call the doc and have him order it.)
2) Schedule tests and go.
3) Ask to be put on the waiting list for a first-available appointment.
4) Go in the next time and a) remind him about your mother, and b) remind him that you have invested a large amount of time in researching this.

Smooches, hon. We'll walk, crawl, or push through this. :)

I know. I'm just tired of feeling like the walking dead.

I'm also upset that I didn't feel listened to. I mean jesus christ, this is just wetware debugging. Rule 1 of debugging: listen to the users, catalog the evidence, use it as your guide. Rule 2: If your hypothesis doesn't explain the evidence, it's almost certainly wrong. Instead, this was like dealing with outsourced tech support. He had a script to go through, and nothing I said was going to change that course.

I can't be on a six week turnaround treadmill like this. I'll go insane.

He did open up the script to allow for the ACTH test, though.

I think the six-week turnaround is based on the tests. You could always ask to schedule the follow-up visit to that now, when you ask to be on the cancellation call list. ;)

Well, the ACTH test is just written as 'ACTH', not 'ACTH response', nor outlined with a time table the way the glucose response test. Nor did he go into detail about the ACTH test the way he did with the glucose response test. He made it very clear that the GRT was one I would have to sit there for, but he did not say that about the ACTH. I believe the ACTH is just a snapshot (again), but I called and left a message for a callback to confirm.

And yes, I will definitely be calling back to see if I can get on a cancel list.

I want you to feel better very, very soon.

It has been my experience that dropping information about your background in physics tends to garner instant respect from most physicians. They were almost all terrified of the physics section of the MCAT. In short, indicating that your background in physics moves you from the 'dumb patient' category into the 'smarter than me' category. From there you can actually get them to treat you like a real scientist, with reliable data to report.

Heh. For about three weeks, I kept a log tracking how I felt, what I ate, how much water I drank, what my BP, pulse, and glucose levels were, and even how often I urinated. I handed them a copy today, and the nurse said "I have *NEVER* seen this detailed or well-done a chart! Wow!" At first, she thought it was from the referring doctor.

I thought it was half-assed, with not nearly dense enough data sets, but they seemed to like it. So *maybe* I can convince them I'm not a totally buffoon. :}

I doubt your doctor looked at it. Physicians commonly consider patients to be unreliable reporters at best, that's why it's important to drop the physics thing... make them flash back to possibly staring down a C in their mechanics class...

My problem (well, the relevant one, anyway) is that, if there's anything in my stomach when I brush my teeth, I throw up. Back when I had adequate insurance, I decided to investigate this problem. I have a very specific repro scenario; I have eliminated by myself all the possible factors I could think of.

All the specialists I talked to (OK, mostly talked /at/) assumed that they knew what the problem was and weren't interested in hearing about the evidence I'd collected that might indicate they were incorrect.

Thus, I spent three months on Nexium to prove to the gastroenterologist that the problem wasn't reflux, despite the fact that I've never had heartburn in my life and when they scoped my esophagus, they found no evidence of acid damage. Then I spent another three months on some sinus medication whose name escapes me to prove to the ENT guy that it wasn't whatever _he_ decided it was. When that ENT guy retired and they shifted me to a new one who STARTED OVER AT THE BEGINNING, I said screw it and I just make sure I only brush my teeth when I'm really hungry.

The point being that doctors are a product of their environment, and there are two major factors smacking you upside the head right now. First, that people are sufficiently complex that they cannot be considered deterministic, and second, the vast majority of patients are unreliable witnesses at best.

I don't know this, but I suspect that the average patient is just flat wrong about their symptoms often enough that their testimony isn't used as anything other than a vague indicator, and the tests, being "objective", are used in place of actual investigative conversation. For the most part, this is probably the correct approach, no matter how annoying that is in the rare instances that it _isn't_ the right approach.

The problem, as you've discovered, is that when something out of the ordinary is going on, a doctor is not likely to take the inspirational leap to the correct test if the standard battery aren't conclusive. I'd say the right thing for you to do is what you are doing--research it yourself and make sure you get the right tests performed.

In the long run, if the doctor's any good (and doesn't retire on you just when you're starting to get somewhere), the continued failure of the standard approach will lead to an improvement in the listening thing, and presumably to a more appropriate approach to the problem. Not that that's going to be particularly comforting in the meantime.

(And the observant will note that, even knowing all this, I did not wait around for the process to work its way out in my own case.)

So good luck, and be patienter than me. :)

Thanks - I always feel like I need to wear a big sign that says "Not A Dummy!" when I go to the doctor's office... sadly, they probably *do* need to adopt that attitude with most people. :/

I just wish more people were qualified to wear that particular sign...

I suppose the grown up version would be "I think you are incompetent, please give me a refferal to another specialist in your feild who is competent. Now. Please send my records over today. Thank you."

I tend to get outta there after that, but it will usually snap them out of their Godlike headspace long enough to get something useful out of them.

It's not *nice* to tell people they're incompetent, but if he asks you *why* you can *tell* him, and perhaps get something out of him.

PS- have you tried tapping on it?

Hey, come on, you know what happens when you trust user reports. :p

It really sounds to me like he's on the 'starting from the beginning' track too. He wants to see for himself that you really are a non-pigmenting glucose-happy salt-drinking freaky-deaky-dude. Or maybe he just wants to keep you coming around so he can look at your butt. It's a tossup, really.

I bet you could convince him you're a salt freak if you came in with a salt lick, though.

Always remember: it could always be worse. You could be on fire.

*laugh* True.

No, with

ginkgo's research, it's obvious he's not *solely* focussing in on the glucose, which all that really annoyed me. That's the one thing that I feel has been pretty well ruled out, if not absolutely conclusively, then 99.9% conclusively. Our conversation centered around that, however, and he didn't really mention the purpose of the other tests.

Soooo....

But now I feel like he's doing, if not a carpet-bombing from-scratch testing approach, he's doing a more precise focus on a few tests to eliminate certain possibilities. I can't really argue with that.

Well you could, but you'd be a jerk. ;)

I feel your pain! The god-complex is alive and well, and seems to be worse with specialists.

- My appointments with the endo are usually about 6 weeks out too, so I think that's due to busyness rather than the tests. Maybe ask what the turnaround time for the tests are.
- The cancellation list is very useful. I usually get in within 2 weeks of getting on it.
- Endos are more used to dealing with infertility and diabetes. It may take him a while to move out of his comfort zone. I suspect every endo will be the same in the beginning, whether or not you're smart.
- Things that helped me were a symptoms chart and telling him what the diagnosis was, though it sounds like you have already done both of those.
- My endo barely seems to remember who I am from one visit to the next. Your situation and need are strong enough that you might try something to stand out with the doctor - maybe not cookies, given their sensitivity to diabetes. Something tangible though, rather than just your great personality.

It took over a year to get treatment for my PCOS, once I started really pursuing it with my doctors. For the most part, the hard thing was to get to the endocrinologist - my ob/gyn finally referred me for infertility, and I used the opportunity to convince him. The insulin-resistance helped a lot, though - whatever I have, that was a symptom he could treat, and the treatment (metformin) helped all the symptoms.

I still have a serious problem with the side-effects, which he blew off twice. I will have to see if the manufacturer's warning that you *can* get hypoglycemia will convince him.

Thank GOD for the internet and supportive spouses. People with uncommon diseases really have to manage their own care. Without the internet, it would be much harder to find the info, and without the spouse, the symptoms can make it really hard to interpret it.

Best of luck, sir - we're thinking of you.

Just realized: don't want to discourage you: this should not take a year.

For me, it took one visit to the endo to get a prescription. I had already done 9 months of asking for help, then 3 months of blood tests, so there was enough evidence to move immediately.

I didn't even get as far as the fasting glucose, though - so you've already finished what took me a year to do.

My experience is that physicians are ruled by statistical frequency. They start with the most common thing and rule out their top ten before they even consider the rare explanation. This creates a lot of lengthy process for the patient with a rare problem who may get burned out before the doctor can get to the end of his or her process. Keep in mind that July is around the corner which, in a hospital-based practice, means a bunch of clueless folks will suddenly appear that don't know what they are doing. So expect things to operate even more inefficiently next month than usual. I think Ed makes a good point of getting the doctor to view your role as a historian differently. I get different treatment when I mention that I was a medical student. The new patient visit also isn't typically the most efficient. Only with the experience of you being reliable over several interactions will the doctor begin to trust your reporting. Finally, in most visits the doctor does about three things anyway. In your case that may be to rule out three obvious things in the first visit.

Gah. That sounds like the experience Marshal had in Durham with the ENT guy his doctor referred him to. Marshal had done a lot of research, and was pretty sure (based on the testing they'd already done, as well) that he had Meniere's syndrome. The ENT looked at him, and said, "Nah...that can't be it. Let's do some more tests." And nothing he tried helped.

The first doc Marshal went to see after we moved back and the dizzy spells got worse listened to what had gone before and said, "Yep, sounds like Meniere's, we can do *this* test to find out for sure." Lo and behold, that's what he's got.

Apparently, so did Buzz Aldren. <laugh>

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And the verdict is...

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Find a way to drop your physics background

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I know how you feel.

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