Please help, trying to figure out where the cushings is coming from?

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Has anyone had to do a urine sample every day for 28 days to help diagnose which gland is the problem?  I've had that horrible petrosal sinus sampling done and the levels are not what they would like to confirm it pituitary gland! Please can any one shed light on how they will determine which gland is the problem? I definitely have cushings but they don't know where? sad  

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  • Posted

    Hi, I had the petrosal sampling, horrid! But I was not asked to do a urine sample for 28 days.  As you know it can either be cause by a tumour on the Pituitary Gland or on the Adrenal Glands which is probably why they have a sked you to do the test.  I hope that other members may have had this test and will reply to you.  Keep smiling you are on the way!
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    • Posted

      Thank u Vicky for replying. That test really is horrid an they had difficulty doin mine which is mayb why the results have not come back the best. So now I have to do this 28 day urine test. I'm so fed up with it all. I've been outa work 9months an everyday I feel myself gettin worse. It hard to do anything with the aches An pains an general deteriorating an tiredness. An then I don't even sleep at nights I see every hour. They seen some thing on my MRI scan of my pituitary but then that sinus sampling test results didn't come back to the levels they wanted. Ct scan of my adrenals showed nothing. So I'm really at a lose here.

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    • Posted

      You said that they saw something on your CT scan of your pituitary gland, did you ask what they specifically saw? I do not understand the 28 days of urine tests in a row, unless they are looking for "cyclic" cushings, which I am the first person diagnosed with theat in 1989 in Seattle, WA.I know this is difficult the waiting and the frustration of bring ill, but it's only been 9 months, it took 9 years to get my diagnosis. So patience as Cushings is a rare and difficult disease to diagnose. Be more bold and ask lots more questions of your doctors, ask those why questions, ask to see your CT scan, have thar Dr show you, ask why the 28 days of urine tests. Yes, I agree need the dexamethazone test and if cat scan of head was done without dye, request it done with dye. All they could see on my mri with dye was that the stalk of the pituitary gland was bent, suggesting a tumor. The radiologist saved my life. Are you having blood tests along with urine tests? Blood and urine may not match if you are "cyclic". Just be more vocal with your drs.

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    • Posted

      Thanks cycliccushings. I think I have read ur story in other forums on here, 9 years!!! That is honestly awful! How did u manage for 9 years. I'm only 29 years old an I feel 90 years old An in fact I know ther is probably fitter 90 year olds than me at the minute. I can't imagine being this way for that length of time. U must have been so unwell an gettin no where. Terrible! But u are well now? To be the first person with cyclic must have been scary too?

      I have spoke to the nurse specialist today so she said the doctor is certain it is pituitary but I must not be producing a big out out every day, I think they are querying cyclic (if I'm honest I still don't know much about that one). I'm not fit for work or socialising, I do get myself out of the house everyday but it hard when ur sore An tired. That why I can't believe u had nine years of this. I know I'm doin rather well in terms of bein seen an gettin results etc, but that's cause I am pushing it. I don't wait for them to contact me. I try to ask the questions, it sometimes hard for me to understand it all. No blood tests. Just urine An possibly saliva. But I think they want me off my diuretic tablet for two weeks before I do the tests. Which means more waiting. I like things done yesterday. Haha. I'm very impatient when it comes to wanting things done. But I'm sure u know all too well how that feels.

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    • Posted

      Yes, it is very difficult to.go through tests after tests after tests. I should own a gold pee bottle as many times as I did them. Because I was cyclic that is why they didn't believe me, I was finally placed in an ICU, given special testing medication for a week. They watched my personality change, my appetite change, it was quite the eye opener for the.drs. They had a special seminar about my case with Endos from around the world. As it was so rare. As you may have read, I had that surgery in April of 1989. In Jan of 2016 I was diagnosed again with a recurring pituitary tumor and had surgery again in may of 2016. Each person is different, their recovery, the changes back to normal weight etc

      Because it took them 9 years to diagnose me, I never responded well.to weight loss. I went from 110 to 276 lbs within months. I weigh 213 lbs right now, I'm still obese. I've had numerous surgeries, at least one every year, I've never been able to regroup and get to.workout enough. I finally bought an elliptical machine and I'm trying to work out; however since the last brain surgery in may 2016, I've had cellulitis in one of my feet,.3 months down with that, then I had tma, a small.stroke in my head, twice, and a kidney infection, I just finished cataract surgery 2 days ago, may have a kidney stone, for the 9th time, ultrasound next week. Both my hands, I've had the 16 hand surgeries, and now both hands all.the joints are sliding and so that means the surgeries I had done at least 10.years ago are now deteriorating to the extent I will.need numerous replacement work on both hands. Believe me, you can still be determined and keep.your head up, grit and determination and never give up. I'm a pencil artist, graphic designer, digital illustrator, the last 2 I acquired within the last 8 years, so this too.shall.pass and you will.get diagnosed. Also believe me out of all the horrific surgeries I've had, the pituitary surgeries I've had were the easiest ones. It sounds difficult, but with highly skilled neurosurgeons it's normal.procedures for them

      I found the recovery doable. And with you your body should return back to noreal size and you should gain back your energy and feel.lots better.Take one day at a time now and know that they will.get you diagnosed and back to the road of getting your health completely back. If you have any question feel free to ask.

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    • Posted

      You poor thing. You really have been through the wars! An u keep so positive, that is admirable! It really is!

      U said ur personality an appetite changed? In what ways? Very moody, emotional, loss of appetite? That is how I've been in more recent months. I feel like a psycho sometimes over nothing haha.

      I'm still awaiting for them to figure it out. I start this 28day urine sample an saliva tests this week. But sure then I'll have to wait on the result An hope it what they want so surgeons can operate! It a very long process an the symptoms don't go away or get any better, as you well know.

      All very frustrating. But nice to hear other people's experiences An know that I'm not going crazy when I feel this way.

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  • Posted

    Hi there. They found out where my tumour was by giving me the dextramethasone test. My bloods confirmed that the tumour was on my adrenal gland rather than the pituitary. I then had to have a CT scan to determine which side it was on.

    In the beginning i just had a 48 hr urine test.

    I hope i have been of some help.

    Hang on in there. All the best

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    • Posted

      Thank u caroline31144. I think I've done that Dex test. They were nearly certain it was my pituitary gland cause of the ct scan being clear for my adrenaline glands an MRI showing some thing for the pituitary gland. But then that sinus test they did just wasn't the results they wanted. It a horrible disease isn't it. Are u clear of Cushing's now? How were u post surgery? This is another thing they tell me, I'll b worse post surgery?

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  • Posted

    I had to do the 72 hour urine test three times, also 3 x 24 hour tests over 3 weeks.  Plus three different blood tests.  And after four years or so, eventually had a CAT scan of head down to abdomen.  This showed nothing on th pituitary gland! But, a nodule on BOTH adrenal glands.  The next step is a procedure whereby a catheter is passed up the femoral artery to both kidneys to take a blood sample from each which will, hopefully, determine which of these two nodules is causing the problem.
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    • Posted

      So are u awaiting this test still Elizabeth or have you had it done already? Why was it four years for the scan? Have u been unwell for all that length sad
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  • Posted

    Hi again, so glad that the others have come in.  I am hopeless because after years of tests I didn't care anymore just wanted to be told that there was something wrong.  I was yold repeatedly that Day 2 after the op would be very very bad.  Truth is it was, sorry but if someone who had been diagnosed and had told me I would have been rpepared.  It doesn't last for ever and mine was just a plain old Pit Gland tumour.  I soon came down from a 45" waist and am now back to normal (whatever that is)!  Keep in touch. 

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    • Posted

      Well I've prob had this from I intially had blood pressure problems back in 2012. But this last year it became unmanageable an then all the other symptoms raised their ugly heads. Why was day 2 so bad? Pain? I'd rather people are honest though. Cause you know what to expect. U are well again? An back to doing everything as normal. The weight gain is hard, lookin in the mirror is hard. I hate it.

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    • Posted

      I think it was 2007 that I was first diagnosed with type II Diabetes and rushed into hospital with a sugar reading off the scale! Quite literally it seemed to come out of nowhere.  I had had a bit of a cold and was drinking a lot, then,wham, was drinking like a fish and peeing for Wales lol.  After a few days asked local pharmacy if they did sugar tests, they said no. So went to my surgery to see if nurse would.  She tried, three times! Convinced that the incredibly high reading, with me feeling quite well, was a fluke or dodgy machine, she asked doc to repeat with his more sensitive equipment.  His eyes nearly popped out of his head and he immediately phoned for an ambulance and the next thing I knew I was hooked up to a saline drip and on my way to hospital.  Apparently the reading was too high for his machine to read.

      at the hospital I was immediately admitted and attached to an insulin pump through the other arm. Thus suitably tethered I was sent to a new ward where I was closely monitored.  The really odd thing, to me, was that I had experienced no other symptoms apart from the thirst, which by the time I saw the doc had abated.

      the next day, the Endo Consultant came up to my bed, looked at me, turned to his little entourage and said "this lady has Cushings". He than asked me if I could 'squat' and raise back up, to which I answered 'no', and he again turned to the young doctors and said "Cushings, definitely Cushings". And he spent the next nine years proving it!  but the tiredness, fatigue, weakness, loss of thigh muscle etc, had, now I look back, begun at least a year earlier, and I had blamed it on the statins.  I had even mentioned to one of my GP s that I had noticed that as my belly grew bigger, despite dieting, so my butt and thighs were getting smaller.

      anyway, I am still waiting for this blood sampling from my kidneys to see which is doing the damage.  Sadly, lack of beds, and only two radiologists who can carry out the procedure, means have already been waiting almost two years!  

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    • Posted

      Sorry think I'm only realising u replied here. 2years!!!!! I actually can't believe that, that is horrendous!! An u not well and all them symptoms! Oh Elizabeth that really is awful! How can they let u be this way! Are u even fit to do anything. I'm so cross for u (worse cause I'm full of steriods haha) but honestly I'm shocked!

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