24 hr urine test high but other blood tests normal?

Posted , 6 users are following.

I've been exhausted for what feels like years, it's come to a point where I know something is wrong. So I go to the go and ask to be tested for fibro and me etc, I get a lot of aches and pain, most of the pain is in my shoulders, arm muscles/bones and my right hip is quite often agony. I have gained 5st in 3 years, and really struggle to lose weight, my mood is very irritable/snappy and I never used to be like this, and thinking back to dieting whenever I've become stressed I seem to think 'bugger the diet I need rubbish food' and quit, but I also can't seem to lose weight now and I've been trying for 4 months quite seriously, and I've not lost a thing.

I have typical apple shape, stretch marks on arms, breasts, stomach, thighs, large breasts which have become very saggy, round face, thinning skin, lots of hair growth on face, breasts, stomach and thighs, a very large buffalos hump, in 5ft7 very large hands,feet(were a size8 and are now a 9 wide) and wrists, very bad migraines with loss of vision and vertigo (this last migraine attack lasted 10 days and the headache and pressure are still lingeringly another week on) thinning hair on my head, strange periods,very weak muscles and tiredness/exhaustion, bruise very easily and have sometimes had borderline low platelets on blood results (but were normal this time) I also have urticaria (chronic hives/allergy to something) very loud tinnitus and athsma/tight chest and insomnia 2/7 nights typically.

I think that's it. So off I go to the doc asked to be tested for whatever would make me tired, I think she tested me for fibro/me/rhumourtoid arthritis, full bloods, blood sugar, thyroid, live and kidney function and Cushing's in 24hr urine all the bloods came back normal, but the 24hr urine came back as high cortisol level.

It was the end if the day 6.30pm and the lab was closed, she said she thinks she needs to send me for a blood test next but has never diagnosed someone with Cushing's before, but printed me off an info sheet from this website, and a depression questionnaire, which I've filled out, I know I'm not depressed, I've had really bad depression in the past and this is not the same, I'm extremely exhausted and frustrated, and I do get low and snappy and pretty much sick of feeling ill 80% of the time, I feel like I have flu I would say 5 days of 7 but more so this last month I've been poorly every single day bar one for the whole month, I've had a 10 day migraine with loss of vision for 2 days and vertigo and increased tinnitus, and after the migraine went the headache has still been there every day, throbbing/pressure headache by my cheekbones and behind my ears. And this last week i have a sore throat and cough again, in the last 6 months I've had at least 4 bouts of sore throat. My blood pressure is also normal.

Today i feel really frustrated, its mid day here and I've not heard from the doctor, she is supposed to be ringing the lab to find out what the next step is. I've been googling and kind of need some advice and support. I know until I actually have more tests and a diagnosis I'm in limbo. I've told my fiancé but keeping it from the rest of the family just in case it's nothing, and just in case it isn't nothing. Normally I'm a big talker but I can't tell people yet. So figures I would try to find some help online. Thanks for reading.

1 like, 36 replies

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  • Posted

    I don't know what to do for the best, I had a relatively good morning yesterday, woke with a very mild headache, took painkillers and the pain actually went for a few hours. I've managed a total of an hours sleep tonight, the pain in my face/head is so bad that I can't sleep, I've had more pain killers, my tinnitus is really loud too. Now into day 16 of headache. Wondering if this is a normal thing to experience, I've been thinking that It will go away soon, be patient, I've never been able to breath through my nose either, perhaps I just have sinus problems? Unconnected to the other symptoms, and could explain the migraines/headaches. I dont have a cold or anything, but I have had a sore throat for about a week now, this is a recurring thing also.

    The pain is so bad that I can actually feel my teeth/palette pulsating sad

  • Posted

    I feel exactly the same. Although my blood test for cortisol was high and I'm waiting for my 24hour urine. All other results were negative. Have you tried the 9am cortisol blood test? And have the Drs mentioned the dex test (stands for dexamethasone or something) that might help. If it's positive then it's cushings in the adrenal gland. If it's negative it could still be pituarty or the thing beginning with h higher up. Sorry I forget the name of it 
    • Posted

      Hi, yes I had the dex test on Thursday, waiting on the results now. I also read that the test is to find where the tumour is, my doc didn't explain this to me just that it was a test for Cushing's. Hope that after the results next week she can give me some medication, I'm so exhausted, I have no energy at all.
    • Posted

      Hopefully when they come back the Drs will do something. I've been signed off for 5 months now and am housebound and even though Drs know my cortisol is high I haven't been given anything other than pain medication which hasn't worked sad 
  • Posted

    Had my results back today, the dex test was in normal range (30something) so she said thats good news.. But from what I've read the dex test only shows as high if its caused by adrenal glands? I explained this to her and she said she really doesn't know where to go from here, doesn't know what other tests to do so has referred me to an endocrinologist. I'm taking my eldest daughter to see her on Thursday to start off her 24hr urine test to see if she's also got symptoms, so basically I'm none the wiser,but was Ted to update.
    • Posted

      You'll probably need a 24 urine and/or a midnight saliva test. Oh I hope you and your daughter are okay 
    • Posted

      I've already done the 24hr urine test which came back above normal range. Just googling other tests for her to do. Think I'm more scared of there being nothing wring with me than there being something, not normal feeling this s**t rolleyes
  • Posted

    Just read that I wasn't supposed to eat anything for10-12hrs before the test! I'm gonna have to do it again! Should have taken thedex between 11-12 took it just after midnight. This is so frustrating!
  • Posted

    I think it is wonderful that it looks as if you and maisie do not have cushings.  Hopefully the endocrinologists will do more tests and be able to sort you out.  Believe me you don't want to have Cushings.  I am today having a duvet day!
    • Posted

      I can tell you that I don't want to HAVE IT, however to have almost every symptom and be exhausted at doing nothing, I would like an answer and some help, something is wrong with me, and whatever it is isn't normal. I quite often become so exhausted and feel so fluey/ill that I can't get out of bed to even see my children.
    • Posted

      Thinking of you,Vicky.Hope you're feeling better soon.Gill
    • Posted

      All my tests came back normal which in a way is a huge relief. In another the symptoms are getting worse and I'm having new ones. Got to see the endo again to talk about possible cyclic cushings. But it's terrifying. Last night I had an attack of pain on my left side abdomen and was screaming nearly went to a and e. It was awful. But after 20 minutes it went. It's still sore today worse than usual. I took trsmaodl before I felt it coming on and that made me spin out I felt drunk kept seeing things and checking behind me all night in bed, barely slept then work up to feel high with dilated pupils luckily it's worn off now but I need to know what on earth is going on. Before all this I was head girl I loved my college course I walked to college everyday was very social and now I'm a recluse 
    • Posted

      sorry to hear you are in so much pain, but glad that it is not Cushings.  Be careful with the Tramadol, I am fine with them but I know some people are badly affected.  I do hope that you and Nutty fruitcake will soon find out what you are suffering from.  I was tested for 8 different diseases before Cushings! Take care
    • Posted

      I rarely Taken tramadol as it makes me see things and be paranoid. But it's the only thing that reduces the pain. Can I ask what other diseases you were tested for? Because it may be worth me testing for those as my symptoms are very cushingoid but it's not 
    • Posted

      You're right,Vicky.Taking Tramadol alters my heart rhythm,so can't take it now.
    • Posted

      Hi,  I was tested for:- Lupus, Sarcosis, Chrohns, Coeliac, Guillame Barre.  That's all I can remember.  They didn't necessarily have all the same symptoms.  It was only the excess hair and sweating that caused my Gp to test for Cushings.  It could also be a skin problem causing the Stria or an allergy.  I can only say what happened to me.  Maybe some of the others can tell you what they were tested for.  I hope you find the answer.  Talk to your GP and Endo though.  They are there to help. 
    • Posted

      Thanks, I don't think I've been tested for much at all. I've had blood tests but there for measuring iron levels, vitamin levels etc and also functions of everything so liver, kidney, thyroid. But then everything will all centred around cushings and now my results are negative I have no idea what the next step is. I'm just trying to look for things that present themselves in a similar way to cushings in order to get any clues at what's wrong with me. Thanks again 

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