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1632656 tn?1310693271

possible Cushing's

I need someone's opinion,, please. Ok,, I had to take a Dex test because my Cortisol level was high,, 26.4 in a fasting state at 8AM . I suppressed super low I guess at barely 1.5. So the Endo I know is going to say I dont have Cushing's , even though my Primary thinks I do. So ,, what does this mean to have an abnormal suppression response,, the fact that it went extra low?? Im so confused.
Best Answer
Avatar universal
Timing of testing is critical for these tests - it really matters - so she does not know her stuff.

She was probably reading the levels for normal cortisol. When you get the test the lab does not know you had dex so the ranges are still for AM cortisol - so for that, you are, gee, really low - but for the test - you almost made it - again, showing, she has no idea how to administer the test.

Find another doctor.
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Avatar universal
I hope you start a new thread!

I would go to a different doctor. The MRI may be read as normal, but you may still have something there (and was it a proper dynamic pituitary MRI?). That has happened to so many I know!

With high sugar and high cortisol, those are great indications that you do have cause for investigation. There is no one test that says  you do and do not have Cushing's nor the source - it could be pituitary or adrenal or other - any ACTH testing (again, done properly chilled tube, spun immediately, frozen right after the spin - it degrades quickly)?

If your doc does not know what to do - look in the health pages, and find one that does! I had it myself - not a good thing to just wait around with.
Helpful - 0
3244572 tn?1346862555
Hi my name is Curtis and I am diabetic for 12 years but under good control using oral meds and very large usage of insulin 3 types now but my numbers have been all all over the place, now they said I had large amounts of Coritisol in my blood,had a MRIi don't found nothing ha all the test twice results the same...and then my doctor said "we don't know what to do....
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Avatar universal
Once test is not or should not be the entire picture - the doctor should check for a loss of diurnal rhythm and see what is going on.

8:45 is within the range time. Point in time tests are hard to catch sometimes.

Hopefully the doc will look at the entire pic?
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1632656 tn?1310693271
I guess My Cortisol is fine now ,, huh???? Im so confused again lol my blood Cortisol at 845 ( lab didnt open till 8 with a waiting line,, thats why not at 8 like it shoulda been))... was 10.2 .. with the range of 4.0 to 22.0.... so now she is going to say Im fine Im sure ,, how the hell did it drop by over half????? I still feel awful and my arms are so weak as well as my legs,,, agh... how do you do this ?? so confusing...
Helpful - 0
Avatar universal
The lab does not tell you to do that - I learned that one from experience. I found that taking a warm pee in led to getting worse results as they tended not to get to them right away and they just got warmer. So I bring them in cold now. Sometimes with an ice pack (I get a bunch of freebies with my growth hormone). The cold thing is optional therefore - so you shall see how it turns out but the test is really invalid since you did it inaccurately.

However the timing thing should have been given to you in instructions from the doc or it is all over the net.
Helpful - 0
1632656 tn?1310693271
why dont the lab people tell me these things???? agh ,, so frustrating,,, yeah I did my test wrong then. I started at around 11 the previous day and the following day i did my last pee when i woke up at 1 30 not 12 45 like i previously thought,,,, know when instructed me what to do,,, then the when i went to turn it in i had to go back home for paperwork i wasnt told to bring so the specimen was completely warm by then lol crap. well hopefully round 2 is more accurate,, what would i do with out you lady?? lol
Helpful - 0
Avatar universal
Make sure you get copies of your tests! Make nice with the staff and get the copies before you leave every time you have anything. I ask the lab to send me a copy but that is about 25% now.
If you start at 12:45 you end at 12:45! it is a time thing! Discard the first void and go from there.  I wait a day before turning in so my specimen gets nice and cold in the fridge now.
Helpful - 0
1632656 tn?1310693271
thanks lady,, yeah I have no idea the range they are using and I have been staying up till 3 or 4 then waking at 1 or 2 in the afternoon,,, i heard that can make a big difference as well,, i had my morning pee at 12 45 in the afternoon the day I turned in the specimen so,,,,, lol,,,,,I knew this wouldnt be an easy road,,, thanks for your input was needed greatly!!!!
Helpful - 0
Avatar universal
Some labs/methods have a 34 cut off so you may have been almost there - or the cut-off is 50 but that test is oddly less specific (the other test is better)...

As for the point in time vs the average test... there can be lots of reasons to be high in one and not in the other. Sometimes it is just hard to hit a point in time test. As for the averages, I used to mess mine up as I was high at night, but low during the day - ergo - my average was just FINE but I was sicker than a dog... also medications can interfere with free type tests (urine and saliva). Also if you have a high cortisol binding globulin, you just may have less free cortisol around even though you may be sick. Lab error - if you had more than one jug and the lab tech did not mix them all and them take the sample - error. Did not keep cold - error...

Is that enough?
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1632656 tn?1310693271
ok,, how is it that my 24 hour urine test was normal but I still have high morning blood cortisol????? so confused!
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1632656 tn?1310693271
ok,, got my 24 hour free urine results,,,,I think they are normal,, the girlon the phone said I had a 33.1 level,,, i have no idea what the ranges where lolI ll know more at my appointment I guess// any info you could give would be great,, thanks lady ;... I keep thinking she read my am blood levels though,,, ugh
Helpful - 0
Avatar universal
Yup - keep it COLD...
The creatinine is tested to see if you over sample - as in collect more than 24 hours. However some of us have high creatinine (I was told, rudely, that the doc expected since I was a big girl) so it is not perfect - but that is the reason.

If you can't get to the lab super soon, you can even freeze it but it has to be thawed before you take it to the lab - thaw in the fridge. The peecicle can never be warmed.
Helpful - 0
596605 tn?1369946627
Hiya-
Refrigerate, no matter what they say.
Also, if you pee more than one jugs' worth in a day, you should ask for more that one jug. They should have given you a little cap thing that you put over the toilet seat to catch the pee. Then when you are done preeing, you transfer it from the cap into the jug.

Yes they measure creatinine too, as part of this test.

When you turn it back into the lab they will measure the total volume, keep a small sample and then toss the rest.
Happy pee-ing
Helpful - 0
1632656 tn?1310693271
ok,, i see why the creatinine test was ordered lol but is it normal to just use 1 jugg for collection and not to refrigerate???
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1632656 tn?1310693271
Ok lady my computer has been down and I have been dying to ask you something lol,,, ok,,, I have my urine collector for my 24 hour collection and its just 1 little jug thingy,?? I thought it would be lots of individual cups lol how do they test cortisol like this????and they told me I dont have to refrigerate it??? I read you always do... so now Im confused and i CANT REACH MY DOCTOR.... oops caps lol,,,,, how do they test my 24 hour urine in 1 jug??? I thought they were testing for times when it would be higher and lower and such?? how can they do that with 1 jug?? Im so confused,, oh ya and on my sheet it says to test for creatine too. whats that?? help!!!
Helpful - 0
Avatar universal
I don't know what RSD is... yes, there are script meds to lower cortisol usually ketokonizole however it can lower you to a point that you need replacement meds (in fact most take replacements on it) and you have to take it only for a short time due to liver issues and be monitored closely... There is a new drug coming out (corlux) but not sure if it will be long or short term again. Keto is usually used for really bad cases to help get them feel better before surgery so they don't die in surgery.

So your endo is not up on the latest... besides, one ACTH test means squat. Lab error is rife.

I went on a doctor hunt...I doc shopped like there was no tomorrow.
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1632656 tn?1310693271
well,, this is a strange one,,, My Endo hasnt ruled out Cushings yet but she is wanting to look at me for RSD???? where did that one come from??? Im assuming Its because of the burning palms ,,I swear,, Doctors will reach for anything other than Cushings,,,, Cushings must be a ***** to pin point lol This hump and these stretchmarks dont say RSD though,,, I must admit I do have alot of the symptoms and hell, maybe I do,, but My High Cortisol has to subside,,, She tells me there isnt a drug they can give me to lower my Cortisol... so what?? They are just goin to see if I lose weight after lapband or diet pills and diet change and " SEE" if my cortisol lowers??? I think that is the plan if this ACTH test shows normal,, * sigh* how do you ladies do this??? frustrating .
Helpful - 0
1632656 tn?1310693271
Hello there!!! Thank you for your words of encouragement!!! Its been awhile how have you been?? Ill talk to my doctor about that IGF level you mentioned,, and you are so right bout doctors needing to get this done allready lol I have noticed a lot of us go threw the same thing ;( hope your doin well lady!!
Helpful - 0
596605 tn?1369946627
Hiya-
I've been following your saga since the beginning and wanted to let you know that have someone else rooting for you, out there in the world. That these dang docs git their crap together and git you some answers girlie.

Just wondering in in all of this mess if your IGF level has been checked? That is the marker for growth hormone. Just thinking that this might? be part of it...that you are off in the Growth Hormone department. high or low...The symptoms of low GH overlap quite a bit with Cushings.

Sending a virtual hug from Hawaii
Horselip
Helpful - 0
1632656 tn?1310693271
omg girl Im kind of scared now,,,,, I need your input.... I have had this problem over the years ,, about 5 or 6 where the palms of my hands burn really bad but they are not hot when someone else touches them,, it hurts really bad and it lasts for 1 to 2 days,, its been happening more frequently lately,,, twice this week now,,, I just looked it up and It says it could be Neuropathy caused by a tumour or something pressing on the nerves,,, have you heard of this?? could this be related to my Cushings symptoms???? Im not allergic to anything ,,,, Im kind of nervous now.
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1632656 tn?1310693271
LOL I so hear what your saying lol ,,, yeah I have feeling this is going to take some time ,,, I would of had this for about 10 years so I hope not to much more but after reading stuff I fear it will be,,, yeah she was wrong when she said adrenal Cushings is more common,,, I read Pituitary is ,,, - sigh- Ill go a lil longer ,, get a lapband lmao then move on to the next who wants to call me fat lol,,,, and yes,,, I have checked and simply overweight people do not have this lump on theyre back ,, theyre whole back is bigger ,,, I showed her my stretchmarks too but they have faded in color cause I use retin a on em and have fer years lol they are still theyre though,,, well we shall see lol thanks again for your info lady,, you keep me someone sane ;)
Helpful - 0
1632656 tn?1310693271
LOL I so hear what your saying lol ,,, yeah I have feeling this is going to take some time ,,, I would of had this for about 10 years so I hope not to much more but after reading stuff I fear it will be,,, yeah she was wrong when she said adrenal Cushings is more common,,, I read Pituitary is ,,, - sigh- Ill go a lil longer ,, get a lapband lmao then move on to the next who wants to call me fat lol,,,, and yes,,, I have checked and simply overweight people do not have this lump on theyre back ,, theyre whole back is bigger ,,, I showed her my stretchmarks too but they have faded in color cause I use retin a on em and have fer years lol they are still theyre though,,, well we shall see lol thanks again for your info lady,, you keep me someone sane ;)
Helpful - 0
Avatar universal
You can have normal ACTH and still have Cushing's - that is just not the way... first of all, it is a very very difficult test to get done correctly. Normal ACTH can indicate adrenal sourced-Cushing's. However I had pituitary sourced and I had normal ACTH... so it just is not a perfect science yet...

They don't make money on Cushing's - all office visits - no drugs, and face it - we are just a bunch of overweight whiney people, depressed - who the heck wants that!? LOL... better to just look the other way and give anti-depressants!
Helpful - 0
1632656 tn?1310693271
lol yeah sounds like the lapband is a doctors savior?? lmao,,, I think she is tracking that FH and LSH though , your right lol again :)..... um... she is relying heavily on this ACTH  test though,, saying if that comes back with issues than its positive I have it ,,, I guess lol,,, I think she was telling me she is willing to give me all the tests required but she wont keep retesting me ,, its too tedious?? lmao,,, a lil better doctor but still not quite right i guess lol,, well we shall see,,,, can I still be positive with cushings if this ACTH test comes out normal???
Helpful - 0
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