Fast Dexamethasone metabolizer?

[Guest mayfliesmayfly]

After testing and seeing a million doctors for thyroid issues (diagnosed with Hashimoto's, TSH is around 3 and low FT3 and FT4) without an treatment, an endo said I should be tested for Cushing's. 

 

DST 1 mg test:

Cortisol: 2.9 ug/dL (range 0-1.7)

Dexamethasone: 128 (range 180-550)

 

She said because I metabolized  the dexamethasone quickly, that the results were falsely high.  She's going to have me do it again with 3 mg.

 

Has anyone else experience this?  What happened with the new tests?

 

My symptoms (short list):

Hair loss

Weight gain (disproportionate to arms/legs)

Buffalo Hump

Insomnia/Mild sleep apnea

Anxiety

Depression/mood swings

Trouble concentrating

Memory issues

Headaches

Vision problems (focus and depth issues)

Fatigue

Bruise easily

Skin heals slowly

Whiskers on my chin

Rash on face

Back pain

Cold feet and hands

Bad circulation

 

Thanks for any information, personal or otherwise!

 

[twinkie]

Wow hon---you hit that lab out of the ballpark if I'm reading it right!  How exactly does your endo know you metabolize dex quickly?

 

My advice would be to find a cushings specialist quickly.  There is a helpful doctors tab at the top of the page, or we would be happy to recommend someone.  Many of us have had to travel in order to see a specialist who could properly diagnose and treat us. 

 

Please keep copies of all your labs, read all you can here and ask any questions you might have.  You are not alone. 

 

love,

melly

[mayfliesmayfly]

Since the level of dex in my blood was below 180, which is the cut off.

 

She's having me do a 3 mg DST, and so I'll get tested again tomorrow.

 

It's interesting because I've never actually met her in person!  I was referred to her (my second endo in the last month) for thyroid issues, which she dismissed.   However, in her email she suggested getting tested for Cushing's. 

 

It's 1 am and I'm not even close to being asleep (as always), so I'm doing a ton of reading!

[TomClive]

Hey good luck with it all. I can't write up a full reply right now but this is the testing I went through around this time last year http://www.nhslothian.scot.nhs.uk/Services/A-Z/DiabetesService/InformationHealthProfessionals/MUHEndocrineManagementProtocols/003_cushing.pdf There's some interesting info on the Dexamethasone testing.

[mayfliesmayfly]

Thanks.

 

Took another blood test this morning after taking 3 mg of Dex, so we'll see.

[BDen13]

Have you done any other cushing's tests, like a late night salivary cortisol or a 24 hour Urinary free cortisol? Those are usually the first tests used to diagnose cushing's, rather than the dex suppression test.

[mayfliesmayfly]

No, but I get a feeling that it's going to be very difficult to get any doctors under my insurance to test for anything else.  It won't stop me from trying to find another doctor, but most of the doctor's I can get with my HMO aren't much help.

[3v3]

I don't recall my DST next day labs actually measuring how much dex was left; just that my cortisol was still the same, meaning I did not suppress. I need to find those papers and see what it says.

Have you had an MRI or CT scan of adrenals?

[mayfliesmayfly]

I don't know if all doctors check for it.  They actually have to send it out to another lab and it takes nearly a week, while I should be finding out about my cortisol levels in the next couple of hours.

 

No MRI or CT of anything.  I highly doubt if any Endo with my HMO will do it if these come back "normal."  So, the hope is that I find a job soon enough and can get enough money to go to a specialist.

[mayfliesmayfly]

As it turns out, I surpress.

 

So, I've asked her to run some other tests, though I highly doubt that she will.

[3v3]

Well, it seems like you did not suppress...go to the ER and tell them you have abdominal pain and symptoms of appendicitis. That's what I did (although it was true, in my case). The CT scan revealed that I did not have appendicitis--but I did have a mass on my adrenal. Wish I had done that years ago, because it was not the first time I had random flank pain.