Monday, August 1, 2011

You Don't Want to Be Sick

On one of the low carb message boards I frequent, there is a person who maybe needs to be evaluated for Cushing's. Maybe.

I do think Cushing's is more frequent than we realize. There was a study that found many diabetics also had Cushing's. There's also a number of PCOS patients who actually have Cushing's. Not that they will ever be evaluated for it. Because it's so rare, you see. So why ever test for it, right?

Just to make it more fun, in case you didn't know, the care for Cushing's is poor, usually requires travel, is expensive and it's all on the patient to make medicine work for them. Which is like pulling teeth and very stressful.

A Cushing's diagnosis is not a magic bullet.

I gave my advice to the person and warned them to keep their expectations low of endocrinologists. Not only do endos routinely see thyroid and diabetic patients (seemingly) to the exclusion of all else, I suspect they also get a decent number of patients who think their weight issues are hormonal.

Which they are, technically, but, practically, medicine has little to offer.

Hormonal anything is a crappy diagnosis. We can't even get consensus on thyroid testing and care, which is a common problem! The care just gets worse from there.

So they came back and wrote something to the effect 'is it wrong that I want my weight problem to be Cushing's?'

*bangs head against wall*

After the hell I've been through? Yeah, it's wrong. There is nothing easy about a hormonal problem.

What should they want? What I want! Which is an easy diagnosis that tests well (plus doctors willing to do the tests) with an established and effective solution.

Given my experience thus far as a patient, I think that kind of diagnosis is a pipe dream.

What was the last slam dunk diagnosis you had? I think mine was pregnancy.

1 comment:

  1. I think you gave wonderful and rare advice to this person and I hope that even if it's not something that's helpful to them now, at some point your having said it will benefit them.

    My mother in law is in the group you describe - she goes so far as to think that ANYTHING that is wrong with anyone is endocrine/hormonal.

    My last slam dunk diagnosis? Hm. I think that would be oral thrush with my current primary care doc, and that's only because he knows it doesn't always have the white patches (depending on the stage its at I guess) and it isn't necessary to have JUST been on antibiotics to get it. I recall he said something like "wow, is that ALL? That's EASY."

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/