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.

[rumpled]

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.

[rumpled]

You did not suppress *super low* - the cut off is 1.8 so you were just a little bit off.
Inexperienced docs use this as a test of exclusion - experienced doc use this test to help determine location (which shows more of a pituitary location, not adrenal). Need more testing for both diagnosis and source (location) to be sure.

[AmandaPanda36]

I just read that as well, that , that wasnt super low,, what was that Endo talking about?? lol I really need a new Endo,, Im going to push my Primary for a new referrall.

[rumpled]

Your test should be disregarded - it was not done properly as well. Pill taken the wrong time and draw the wrong time.

[AmandaPanda36]

That I totally agree with,, She was saying that I could take it up to 9 am and that would be fine,,, she really doesnt want to diagnose me I think lol I am going to have a talk with my primary Tuesday about a new referral ,, I really dont like this Endo. I was close to,, I re read my labs and my level was 1.6 not 1.5 ( not a big error but,,,,) lol I can see this is not going to be a quick fix though.

[rumpled]

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.

[AmandaPanda36]

I totally agree, once agin lol,,, I was reading the same stuff you just said. I have the feeling she doesnt want to deal with it,, just the high blood sugar issue,, lazy Endo ;(,,, Ill definately be looking for another one! Is it normal to have so much muscle discomfort??? I used to be in such good shape,, I was a gymnast,,and now I get sore from a simple walk uphill!! My back and shoulders and neck are killing me,, have you experienced that yourself???

[rumpled]

Yes. The pain is said to come from cortisol coming and going but the pain is not really *known* as a symptom except for weaning.
Corticosteroids treat inflammatory disorders like arthritis - so when the levels in your body vary from high to low, the inflammatory levels in your body go up - it hurts. A lot of us have high inflammation titers - like SED, ADA or CRP.

[AmandaPanda36]

Thanks for that info,,, I was wondering if I was just goin crazy or not lol I feel like I have been at the Gym for hours everda or something,, aggghhhh not nice ;(

[AmandaPanda36]

well I got the order for a few more blood tests and a ct scan so I got a lil further lol,, how accurate is the ct though??? the pain, well I got Advil prescribed lol,, ok, Its really Loding but its the sme thing lol I gained 4 more pounds though,, in 1 week! jeez at this rate I am going to be huge. I am just going to do Atkins and I guess the treadmill for 2 hours like she wants,,,, my back is gonna hurt so bad ,, what do ya do though. Ok,, so again ,, how accurate is a ct scan???

[rumpled]

Just make sure the CT is not for the head - MRI for pituitary is standard, not CT. Dynamic technique is what you need - with and without contrast.

Cortisol does not allow muscles and bones to repair - so if you exercise a lot, you will do damage - be prudent in what you do.

[AmandaPanda36]

Thanks for that again :),,,, I can see how my muscles are just wrecked right now,, not to mention,, where she gave me my whooping cough vacination is so sore and swollen and red with a large bump on it,,, ;(  Its killin me. Ill see tommarow if that ct was for my head or my adrenals,, god I hope its not for my head lol

[rumpled]

If it is, I would decline - why subject yourself to a test you do not need.

If you have a low immune system and you get a live virus injection (no idea if that one is) you can get a bad reaction. I am told not to get any live virus injections - it pays to ask.

Low impact!

[AmandaPanda36]

I had a pretty bad reaction lol  Its about the size of a quarter, raised and red,, sore burning and itchy agghhh my whole arm is still so sore and my neck on that side,, I swear it wasnt needed. Well,, I had the worthless CT scan on my head!! I thought for sure it would be my Adrenals she was lookin at with a CT and not an MRI but nope!!! another useless test lol  I told the radiologist it was pointless and he thought otherwise lol He said,, " if there is a tumor on your pituitary even a super tiny one we will find it" lmao  well he was a confident one huh? lol  " sigh" lets see what this reveals,, I think  we both know what though ,, nothin,, ;(

[rumpled]

And the doc will take that nothing as nothing - even though that is not the proper imaging study... galling.

I would go see a doc re the injection site - you may need some help with that! It sounds like you had a reaction. I know I am allergic to the preservatives in the shots so I am a goner with them and cannot get most flu shots.

[AmandaPanda36]

lol your so right there,,, I went in to see the doctor on staff about my arm and he immediately said,,,, are you being treated for Cushing's, I saw your back ,,,,,, lmao,,,, I guess its apparent to everyone but the tests lol I said I am getting testing done for it but my Cortisol is 27 and he said,, Im sorry to tell you this but in my oppinion you have it,  where was he months ago lol also,, I have gained another 2 pounds in 2 days??!!!! what gives with this disease,, I even have been walking and eating less,,,I guess my lymphnodes in my neck are swollen and my throat is red,, didnt know that lol ,,,I dont know why no one will give me pain relievers stronger than aleve though ;(,,, Im in constant pain on my right side of neck shoulder and upper back,, but they jus prescribe me NSAID, S,,,:(......is that common??? is there a reason why I have to just grin and bare this pain?? do they do this to Cushings patients?? OH ,, and yeah,, I had a bad reaction to the Injection lol I was like,, duh! look at it lol

[rumpled]

Funny how that works... the other docs are blind!

NSAIDs have an anti-inflammatory effect and that does help - just make sure you eat something with the pills or you will ruin your stomach. You don't need an ulcer too.

Yes, it is a rite of passage to suffer. Boo.

[AmandaPanda36]

lol,, well after all this I hope Im in the club hahahahaha again,, thanks for all your help,, Id be almost clueless if it wasnt for you,,, cheers!

[Wesley_27]

I had a CT scan done about three years ago, when my macro adenoma tumour was growing... The CT Scan showed nothing then when I was experiencing severe sharp stabbing pain headaches... Good Ol' Family Doctor looking out for me, I don't even think his mind was in the same room, it was out on a yacht.  

[AmandaPanda36]

LOL Im sure it was ,, or he was thinking bout that Golf tournament coming up lol,,, Ya,, I dont have much faith in this CT scan ,, Im sure it shows nothing,,, and we still wont know why I have a high Cortisol of 27 and this silly buffalo hump on my back even though its classic Cushings lol What you went threw is what Im afraid of,,, I guess it will be further testing ,, aghhhhhh

[AmandaPanda36]

Well,, I got my test results back again lol,,,, still high Cortisol,, now high Cholesterol,,222 to be exact,, Prolactin normal( I was surprised by that as my daily headaches) and still dont know my CT results,,, is high Cholesterol common in cushings??? A new thing is though,, my body cramps up severely when I stretch to hard or walk to much,, Its like its turning on me lol I have to laugh at the situation or I might jus yell at my Doctor ;)

[AmandaPanda36]

My test results are confusing ;( ,,,, ok,,,, high Cortisol ( 26.5) ,,,, low protein and low calcium,, high glucose( 104) and low red blood cell count,, high lipids 222 and normal prolactin,, pth intact and calcium,,,normal prolactin,, good blood pressure I think lol 102 over 68,,, but Im gaining weight fast around 3 to 4 pounds a week no matter what I do,,, I have this stupid buffalo hump and body aches and muscle cramps,, headaches every day,, wired but tired feeling,, fatigue and muscle weekness,, extreme edema in the ankles calves,, and Im getting spider veins now everywhere agghhh,,,, this CT scan better have something on it,, Im worried my Doctor is just going to dismiss me n put me on cholesterol; and diabetes meds which I dont need yet!!! Im getting frusterated!!!

[AmandaPanda36]

what else could be causing my high Cortisol ?????and this hump???

[rumpled]

High cholesterol is common with Cushing's - but also a lot of things. So is high glucose - many develop diabetes type II. All that resolves when the source of cortisol is removed.

Not everyone is the same - so the doc has to test test test and make a case and find the source.

[AmandaPanda36]

Ya,, I was prego 2 years ago ( child didnt make survive) and I didnt have high glucose then or high lipids,, so this is a new development in the past 2 years,, I am 40 pounds heavier but jeez not 100 ( yet) so I dont attribute those symptoms to gettn heavier,,, the high Cortisol I think and the buffalo hump and physical stuff kind of tell me its more than gaining weight lol.... ya im managing to gain almost 3 pounds a week now even with diet n excercise,,,, Ill make my Endo do all the testing he can,, well, as soon as he gets back from vacation! lmao

[AmandaPanda36]

well,, my thyroid tests came back all normal ,, as did my prolactin and everything else lol,, so symptoms stand as ,, high cortisol high glucose high lipids low calcium and protein and low red blood cell count ,, hmmm, ya so far everything else is showing up in normal ranges ,, too bad I dont feel normal lol

[AmandaPanda36]

omg,, can I stop sweating???? I get hot for no reason,, I feel like Im in menopause allready ughhh,,, and my skin is all flushed and swollen,, my ankles look like tree trunks,, not very cute if I may say so lol I look in the mirror and I dont recognize me anymore :(,,,, I hope this new Endo figures this out before to long,, I now understand what you all have to go threw ,,, its funny that my Doctor says she thinks I have Cushings and every one else wants to dismiss me,, feck sake ,, even the ER room Doc took one look at my back and said,, Are you currently being treated for Cushings?? even he knew now its time for everyone else to step up to the plate ,,, I really hate being sweaty lol

[rumpled]

Pregnancy issues are fairly common - I was infertile.
Your doc has not tested any other hormones, vitamins, inflammation markers, and so there are other things that can support the case.

Re sweating - sadly, it is common. I had to stop all hair products as I would re-wet my entire head and then dry and look like a hedge-hog. I would also soak my clothes.

I am not currently treated. I am post-op pituitary and bi-lateral adrenalectomy. The good news is that a lot of that stuff goes away right away - the hump takes a while to go down.

[AmandaPanda36]

You are completely right ,, again lol ,,, they havent tested alot of things,, I guess my Doctor is waiting for the new Endo,,,,, Ya my ATCH hasnt been tested either ,,, well,, and loads of things really lol on to the next test I say ...;),,,,,,,,, The sweating is awful though,, I totally understand the hedgehog comment lol Im glad there is some good news later on down the road though,, shew! how are you feeling after all that surgery??

[AmandaPanda36]

Sorry ,, Im confused agin lol ok,, is ACTH my Cortisol????? they allready tested that as we know,, but I thought it was more complicated than that,, my Doctor confused me with med jargon again lmao,, and Im a Nursing student lol

[rumpled]

Hormones work in feedback loops - there are three parts to the loop - the hypothalamus, the pituitary and the gland.

The hypothalamus secretes CRH and in return the pituitary secretes ACTH which in turn causes the adrenal to secrete cortisol. This is called the HPA axis (Hypothalamus, Pituitary, Adrenal). Each part of the axis senses the levels of the other - and adjusts accordingly. Cortisol is also supposed to rise and fall according to a diurnal rhythm which is what waked you up in the morning and puts you to bed at night.

Pretty much all the hormones (the only exception I know is glucose and that - I don't know there) have some sort of axis - so there should be more than one hormone tested to show what is going on. So just to test cortisol alone is eh... half a...

ACTH though is difficult to test accurately. But when you study and do research, keep in mind that hormones work in circles and that is how they have to identify where the problem is - so if ACTH is super high that means the pituitary is not the problem as the pituitary is doing all it can to signal the adrenal. Usually those people are more tan.

Is that more understandable?

[AmandaPanda36]

Yes!! Thank you!!! I understood that ,,,, now why didnt she jus expalin it that way lol THANK YOU!!!

[AmandaPanda36]

Do you know if Vyvanase is bad for Cushing's???? My Doctor put me on it for my inattention and fatigue,, But I also have ADHD had it since I was 12 lol I was just curious because she didnt know,,

[rumpled]

That I am not so sure - I do know some of my buds are put on Vyvanase or ritalin after surgery if they are still fatigued but I don't know of before.
I would ask a pharmacist. Nothing popped when I googled but the pharmacist would have more detailed information.

[AmandaPanda36]

hello there lol Its been ages ;) ,,,, ok,, well, the downside to stimulant therapy is bruises! and lots of em,,, I lost a few pounds due to the fact I couldnt eat and I felt great for a day or two but ,,, Its hard enough to sleep as is,, and I didnt sleep well at all!! I dunno,, I felt motivated but a few days in and I felt awful!! then I got all sick and achey (achy),, so,, hmm, dunno if its for me lol

[lollybye]

Hi , I didn't understand your post Lol ,are you sick with a virus ,stimulant therapy ? explain to me honey :) hope all other things are great !  

[rumpled]

Yeah - the whole sleep issue with cortisol is bad. I used to bruise badly with that never mind anything else.

Lolly - gee, I hope it was not virus, but she took meds to help her have more energy as cortisol tends to make one very fatigued. However like any med, there are drawbacks.

[AmandaPanda36]

Nah no Virus,, jus this stupid disease making it harder for my body to fight other crap off lol ,, I get to see my new endo on May 27 lmao!! geez they didnt have to rush on my account ;) lol

[rumpled]

That is actually not to bad of a wait - I had had longer ones, sadly...
Keep us posted.

[AmandaPanda36]

well,, I think the downside to stimulants with this disease is that they make depression worse over time :(........... I was great in the beginning but started to get depression as time went on,, and I only lost a teeny bit of weight!!! the doctor was surprised I only lost 8 pounds lol They do help with the dreaded lack of energy but only fer a bit,, that part starts wearing off,,,, dunno,,, hope my endo comes up with something this month,, this is truly annoying,,,, hope you all are feelin well!!!

[rumpled]

I did not take that med, but almost anything I did try when my disease was active did not work as my body tried to thwart it. You kinda have to get rid of the disease.

It is great that you were able to lose some weight, some never can. Hope your endo comes up with a treatment plan for the underlying disease.

[AmandaPanda36]

Yeah even though the few pounds lost was nothing compared to the 45 pounds gained lol,,, nothing I do will make any more weight budge,, - sigh-..... I think it is hard for the rest of the world to understand because we dont look particulary sick, you know?? they just think we are over eating and or lazy ,, not tired,, I have been sleepimng from 12, am to 2 pm,, Ive never been able to sleep like this before,,, ugh, I cant wait to get this thing out of me to be honest lol,,, how are you feeling?

[AmandaPanda36]

One more question,, do you know if the lap band helps people like us??? some one mentioned it to me,, but Im not sure if thats a viable option.

[rumpled]

I know a couple who had weight loss surgery - alas, it will not work either. The weight is a symptom, not something in of itself if that makes sense... and  yes, it appears like like normal weight to everyone else, but it is not.

I used to get weight loss video presents *sigh* so I know...

You have find a good doctor to help you ...

I am waiting for a call ick!

[AmandaPanda36]

OMG people really sent weight loss videos??? Id kill someone lol Yeah I get all the chubby jokes round here,, no one gets it. I thought as much bout the lap band as I hardly eat anyway ,, I hope your call doesnt have too much bad info,, I know how that goes.... good luck and Im here if you need to vent.

[rumpled]

Yes  - really! They were presents for birthday or the holiday - even weight loss books... it was just ducky... my mom and my girlfriends too. Heck, no one really understands.

I am waiting to hear surgery vs radiation... I am hoping surgery...

[AmandaPanda36]

I hope you got the news you wanted. Ugh,, I woulda killed my friends lol... yeah My tummy looks 6 months prego to me right now,, and Im all swolen in my legs and ankles too lol.. I have to laugh Or I will go nuts. Well My appointment is coming up,,, I have a question,, I am sure I have Cushing's either Adrenal or Pituitary I dont know. I have done enough research now to know,, 62 pond weight gain ( even in pregnacy) in 4 months isnt normal,, and 45 pounds in 6 months with no change in diet isnt normal,, that combined with my stupid hump on my back and high cortisol says something lol,,, never had high sugar before,, now 8 months later I do as well as high lipids and low calcium and protein,, this dude better listen Or Ill scream lol; exhausting and annoying road eh??? how did ya do it?? Ill keep ya posted!!! keep me in the loop as well!

[rumpled]

Be prepared - a lot of docs will blame you, your habits (even if they have not changed, they will say you are lying) etc. etc. If you can, bring a person to vouch for your eating habits etc. After a while one doc just kept asking my husband how much I ate, drank if I did any drugs and i was hey! I am sitting HERE!

I had to travel to an expert. Take pictures to show the changes.

[AmandaPanda36]

Yeah,, I kinda gathered that from the way the Endo last time spoke to me,,,, seriously,, they are the experts why dont they get it?????

[AmandaPanda36]

I am researching right now,, but could I have high Cortisol simply from being overweight??? the last Endo tried saying that,,, she said thats why I have this buffalo hump ,, I am not morbidly  overweight,, about 50 pounds supposably for my height,, but still,,, I was wondering that,, I cant find anything that says that,, It all says what my primary doc says,, cushings,,, exhausting I swear ;(

[rumpled]

Go be a hump hunter - we all are. Check out people. Check out overweight people when you are out and about - how many have humps? Even on TV when you see those shows where the people are huge - they don't have purple stretch marks and buffalo humps...

But it does mean that endo does not know a thing about Cushing's and you are better off with a doctor who has a clue. She cannot identify the disease so she cannot test for it.

[AmandaPanda36]

lmao!!!!! I love your sense of humour woman lol,,, yeah My boyfriend and I were just saying that same thing!!!!!  he says he see's peiople way bigger than me and no humps,,, I knew it ,, I had this even when I was 40 pounds lighter,,, thats what actually started this whole thing,, I thought I had a tumour or something,, all x rays were negative and my spine is strait,, thats how my Primary kinda knew something was up,,,, I see my new Endo in 1 week,, Ill keep yainformed,,, I hope your feelin well lady ,, your in my thoughts.

[AmandaPanda36]

Ok,, I have a question ,,lol are you surprised??? I went to the ER cause I have had a menses for almost 2 weeks now,,, with no hope of stopping,,, I know most with Cushings dont even have a cycle wich is how I used to be,, now it wont stop,, they checked me and everything was fine but a tiny fibroid tumour on the outside of my uterus,, they said its normal in women in theyre 30's,, so,, I am on Birth control,, could thnat be messing with this Cushings,,, Im on ortho tri cycline low,,,, should I talk to my endo bout this and is Birth control bad for Cushings????

[rumpled]

BCP binds free cortisol so now any testing like urine or saliva will be lower even though it should be higher - they should test the cortisol binding globulin but most do not.

It is not that the BCP is bad for Cushing's - it just does not help... I had fibroids too... as well as a mess of other stuff...

[AmandaPanda36]

Yeah I was reading that some doctors want you to stop taking them for testing,, no problem there lol Some say they make cortisol higher as well,, but I had this hump and other stuff years prior to the pill,, so they better not be going there with that one ;) We have alot of the same issues I see,,, well I guess we take it day by day huh?? lol hope your doin ok lady!!

[rumpled]

I just read in a medical paper that estrogen causes higher readings... my doc said lower so now I am confused... just goes to show that you have to do research!!! There is a bunch of medications that interfere... I was told to go off them too.

A friend of mine is testing and her doc is jerking her around... it is no fun.

[AmandaPanda36]

Yeah I heard that Estrogen does indeed cause slightly elevated readings,,, I was told that since Im on a low dose pill It shouldnt interfere though,,, I hate the whole this Doc says one thing and another Doc another thing lol dont they read the same research findings?? lol guess golf is more important ;) ..... It is so much easier to blame it on the weight ya know,,, tell your friend I feel her pain,,, I keep getting told by my primary she feels I have it and Endos just want me to consume 1300 calories and work out for 2 hours a day lol on to the next test lol I have a question??? ..... would it be wrong to keep taking my pill for the slightly elevated possibility so they will fix me faster??? for some reason you have to have every symptom for them to take you seriously,,,,,my Cortisol was 127 at 8 am in fasting,, how high is that really??? this stupid hump needs to go away allready lol my spine is perfectly straight under it and Im heavy at 200 but not morbid yet,, I think they want me heavier ,,, ; sigh;.....luckily I am at a slow down with my weight gain,, it does this ,,,  7 pond weight gain a week for a while then a few pound lost then up again lol its my fat yo yo,,, If I dont follow atkins and excersise( which kills me)) I gain like gangbusters,,, I know you heard this story before lol,,, so pill or no pill??? I had all these symptoms 8 years before I started this pill so I know its not that lol I see my endo on wednesday,, sooooo we shall see how competent this one is ;) cross your fingers fer me lol  hope your doin ok my friend,, your in my thoughts

[rumpled]

Then the endo is not skilled in the diagnosis and treatment of Cushing's - that exercise can destroy your muscles as you tend not to recover.

That seems to be a high cortisol - not sure what your lab's range is though!

I had to follow a low carb diet to help me not gain like crazy too. Be prudent on the exercise.

Hope the next doctor is better!

[AmandaPanda36]

I heard that too,, not to excercise to hard,, keep it to low impact walks n stuff ,, a Friend of mine who is in Nursing school told me that one and shes just a student lol seems you n she know more than that endo lol yeah they said my Cortisol was high,, that 19 was theyre cut off,,, leaving me 8 points higher than theyre max normal range,,, I say,, well duh,, look at this thing on my back and these stretchmarks and spider veins that are starting,, not to mention this new spare tire and rounder face lol,, maybe God himself needs to send em a letter maybe than they will come to a conclusion lol Ill let ya know how wed goes ,, cross your fingers :)

[rumpled]

Good... yeah, it is important to try to stave of the weight (I so remember the wave) but not to encourage more damage!
Keep working at other doctors, test with the GP or do whatever you can! It is such a freaking battle! Horrible.

[AmandaPanda36]

Ok,,, So,,, appointment went well,,, she obviously said Im overweight and asked me If I had thought about lapband lol I said yeah if you can get medical to pay for it sure lol,,,,, then she went on to say she didnt think deep down I had Cushings but I do have alot of the characteristics and she was honest saying that most Endos hate Cushings cause its a long difficult rode to pinpoint where it is,,,, jeez I had no idea ( sarcasm) lol,, she said we will do all the testing we need to and she doesnt like the dex test says it gives false negatives ,, we knew that .... she is having me do the 24 hour cortisol urine collection ans on the 2nd day of my next period she wants the acth and a bunch other tests done,,, she says she doesnt think I would have pituitary cause my prolactin is fine but I am not so sure of that as my symptoms point more to that than adrenal but who knows....what is your thought on that one??? at least she is trying though lol well hey I found out Im fat again lmao!!!!

[rumpled]

The dex test does give a lot of false negatives so that is very true - finally!

I have never heard of testing though like *the second day of the period* etc.  so that is new to me... unless she is doing FH and LSH and wants to track that as well?

Pituitary source is the most common (after taking steroids to cause it) and yeah the MRI can be ok so unless you had a wonderful dynamic one of a 3T, ah, not sure... but she is not sure so it looks like you will only get one or two sets of tests.

Lap band! Heard that one a lot though.

[AmandaPanda36]

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???

[rumpled]

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!

[AmandaPanda36]

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 ;)

[AmandaPanda36]

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 ;)

[AmandaPanda36]

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.

[horselip]

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

[AmandaPanda36]

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!!

[AmandaPanda36]

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 .

[rumpled]

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.

[AmandaPanda36]

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!!!

[AmandaPanda36]

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???

[horselip]

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

[rumpled]

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.

[AmandaPanda36]

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

[AmandaPanda36]

ok,, how is it that my 24 hour urine test was normal but I still have high morning blood cortisol????? so confused!

[rumpled]

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?

[AmandaPanda36]

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!!!!

[rumpled]

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.

[AmandaPanda36]

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

[rumpled]

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.

[AmandaPanda36]

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...

[rumpled]

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?

[bluesman56]

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....

[rumpled]

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.