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wow. what a chart. the tests of the syndrome


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I didn't read it all but wow. That is awesome it more or less says what we know that not all test are going to come back right these test are not fail proof. But it also explains why. This is great info and I will take the time to finish reading.

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Wow, what a great find! I am going to compare this to the actual testing events that have already taken place for myself and my Daughter. Want to make sure nothing has been missed.

Thanks so much for the awesome chart. Too bad I am not a research geek though, I may need to Google half of this stuff to understand what it is! If nothing else it may cure the Insomnia for tonight.

Thanks Barb!

PamG

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This is the first thing I have read about the "Liddle's" test that I had while at NIH. I just couldn't find any information when I had this test. Very informative. Thanks.

 

One thing I noticed is there was no mention of Midnight salavia test, which studies in the last several years have shown to be very accurate in determing Cushings. So students out t here are still not learning about the latest in Cushings dx.

 

Thanks for the link, I bookmarked it.

 

Terri e.

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It still says that the gold standard is a 24UFC and a low dose suppression test and if those are normal then you don't have it. But it is a good read about finding where the tumor is once it's agreed you have it.

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Lots of good information! However, it's a very conservative diagnosis site/chart, so be wary. For instance, if one suppresses on the dex, it automatically rules out Cushing's. No salivaries are mentioned, no 10 hour UFC's, and late-night serums aren't really mentioned, either. It does an excellent job of explaing the types of tests and how they are used. And as someone else mentioned, especially good talking about finding WHERE a tumor is once one is diagnosed.

 

Hugs!!

Robin

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it was explained to me that (this is contriversial) the midnight salivary test depends on the absolute that the patient rises in the morning and goes to bed in the late evening. example. i get up at 7am. then i go back to bed at 10 am. i then get back up at 2 pm and go back to bed at 2-3 am. i have always been a night owl. in the summer when there is no school i got to bed at 3 am and i get up at 11 AM. the midnight salivary test is not a good diagnostic test for me because i do not naturally follow the basic cortisol paterns of rising in the mid-morning (6-8 am) and going to bed in the evening(10-12 midnight) . midnight salivary tests dont work for anyone who also works second or midnight shifts with there work. cortisol levels are naturally higher and lower depending on the absolute idea of rising in the morning and sleeping in the night.

 

i dont do eather ... never have... my kids are just like me. we perk up in the evenings around 10pm and become most allert, we crash and fall asleep around 3 am naturally.

 

we are weird . but its better than being ordinary.

barb

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Hi, Barb....

 

According to the research I've read, it's the cortisol that makes us night owls...we don't make the cortisol different because we are. I've posted a lot about the variation in diurnal rhythm and if you do a search with "diurnal" you'll see a lot. If you do another search with "circadian", you'll find other things.

 

Hugs!

Robin

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  • 2 weeks later...

staticnrg!! That is me! This is one question I posted under the adrenal/Conn's section. I am definitely more active in the night. Thus far, I've had more elevated symptoms occuring in the night which may cause a conflict in how I take my medication. I asked my doctor about the possibility of reversing the amount of dosing (taking more in the evening than in the day) to reduce symptoms and she said no, for the reason that we need more cortisol in the day than night. But is this for the typical circadian only? I am a night student for example and I wouldn't want my condition to conflict with my nightly activities. I'm already having trouble adjusting my medication as it is...

 

That was a very informative link by the way, but one thing I don't understand is (this is stemming from another user who mentioned this to me) about the way pit and adrenal is differentiated. Sometimes ACTH pulses and therefore hard to catch in bloodwork. Did they mention this on the site? Their chart immediately flows from ACTH low/independent testing to immediate conclusion of unilateral/bilateral adrenal hyperplasia. As if this is the only determining test. Most other varied tests they have is just to differentiate patients with hypercortisolism from those with Cushing's and those with ectopic or Cushing's disease (pit patients).

 

I am trying to find what other tests are involved that determine that indeed, even with an incidentology of an adrenal tumor, that it is not pituitary, but isolated to the adrenals. ACTH can't be the only testing.

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I have had times when I was more active at night---but kind of thought it was the effects of all the diet coke I drank throughout the day. Having Hashimoto's has really caused lots of confusion for me and the doctors. It's great to know that there may be some other, less obvious reason, why there are days I'm up until late and other times when I'm on a more normal sleep-wake schedule.

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Barb, thanks for the link, hon. It was kind of you to post it for us. :(

 

The information is helpful to some degree but seems outdated, since now it is known that the CRH/dex test is more reliable than either the 1 mg or the 8 mg dex test. Also the 8 mg dex. test is sometimes used to differentiate between pseudo-Cushing's and Cushing's. As others have mentioned, salivary tests are now used too.

 

I still thank you again, because it adds to the information to consider along with other research. That research is the first I've seen that explains the various possible locations of ectopic tumors and gives a percentage for occurrence. I have a dear friend dealing with her second ectopic tumor.

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