24 hr urine test high but other blood tests normal?

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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.

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  • Posted

    Hi,I hate to hear you're going through this,as I was exactly the same 18 years ago.It was eventually the cortisol blood test that came back wrong.Before that I was being treated for depression,early menopause,at 32,viruses.I had all your symptoms,and not high blood pressure.Once that test came back wrong,my GP referred me to an endocrinologist,who as luck would have it,had worked closely with Cushings in Oxford.I found out who I was being referred to,wrote ALL of my symptoms down,and with a covering letter,sent it all to her.The day she received it on her desk she asked me to come in that afternoon,and just by looking at me,knew I had Cushing's disease.Further tests followed,and found I had a benign pituitary tumour,which had to be removed.It hasn't been easy,I have to say,and I'm on a lot of medication.From my very first symptoms to that day of seeing her took 5 years,because Cushings is a rare disease.You really need your cortisol blood level checked,and you definitely need to be referred to an endocrinologist.Oxford seem to specialise,and I was sent there,even though my nearest hospitals at the time were in Southampton and Winchester.I wish you good luck.Gill
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    • Posted

      I felt better afterwards,lost some weight,but you do have to accept that medications have to replace what the pituitary would normally do in your body,as it's such an important gland.I can't say things are fine,I would be lying,but I couldn't continue as I was,so there was no choice but to have the surgery.I have added complications,unrelated to the pituitary or Cushings,which have meant medications have been complicated,so that hasn't helped with me.Please make sure,if you are diagnosed and treated for this,that you are told clearly if and what can happen in the future.I'm not trying to frighten you,but 14 years after it all happened,my thyroid became underactive,because my pituitary was not making I work,and I was found to have NO growth hormone at all,which both made me very unwell again.I was not given either of these replacements after surgery,and wasn't told my body could basically stop producing years down the line.If I had been warned,it would have been so much easier.Really hope I haven't scared you too much,but you need the info and you need seeing by a specialist.Gill
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    • Posted

      I'm 31 so I'm hoping that whatever it is can be fixed or made better. I'm hoping there have been some advances in medicine and the community surrounding medical conditions is so much better with the internet that we can help each other know what to expect and need etc
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    • Posted

      You're right.We didn't have a computer when I was ill,so had to rely on any paperwork the hospital could give me.Also the organisations are all online now,and there are support groups in person and online.I always felt there wasn't enough information for me then,even though I tried to find out and understand as much as I could about the condition.I've been lucky in having a loving and supportive husband and son.My son was only 2 when the symptoms first started,but nearly 7 when I was diagnosed.Hope I've been some help,and not just made you wore more.Really keep on at your doctor,and ask for an endocrinologist referral,as GPs are really not specialised enough.My GP is very understanding,but knows when things are beyond him,and tells me so.He then sends me to someone who can help.It's a very complicated system in the body.Gill
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  • Posted

    Hi,Gill again.I also tried to diet,losing a little weight,but changing shape completely.My upper body became bigger,and my shoulders became big.

    Try googling the info on the Pituitary Foundation site.They are also very helpful if you want to contact them.I usually email,if I need info,but you can speak to someone if you prefer.Hope that's of help.Gill

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  • Posted

    Hi, sorry you are feeling so awful.  Be patient with your GP, because we are so rare most GP;s will never meet a Cuhy!  You certainly sound as if it is Cushings.  After my initial test came back high in Cortisol I was referred to an Endocrinologist who as Gill said was very aware of Cushings.  I had an MRI but the tumour was not visible.  As you may know Cushings is usually caused by a BENIGN tumour on the Pituaitary Gland.  I then had a further test which confirmed where the tumour was.  After the surgery I lost weigh 1 stone almost immediately.  Apparently there is no point in dieting while the tumour is there as all you eat goes straight to fat.  What Gill said is very true you have to understand that the Pituitary Gland controls most of our hormones.  Unfortuntely after surgery I developed an infection in my Pit Gland and in my sinuses which although my GP had diagnosed the powers that be were a bit slow.  I know that Bristol where I went and oxford both have top people so hopefully you are near one of them.  Keep your chin up at least the process has now started.  Be patient and let us know how you get on.  Thanks to Gill for being there as well!
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    • Posted

      Thank you Vicky, I'm in Wales, so unsure what is available here, how was the actual surgery? My go is brilliant, I'm sure she is consulting with whoever she needs to, I've had to take the day off work today as I'm in so much pain and exhausted 2 nights of insomnia, falling asleep by 9.30 and waking at 2.30ish I've lat my voice, throat and headache are really bad today so I'm snuggled up on the sofa with my little girl who has a bad throat too watching Disney movies and feeling a bit sorry for myself. In hind sight I probably should have manned up and went to work to keep my mind off it.
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    • Posted

      The actual surgery was okay but not pleasant after to be honest.  Because they operate through your nose it runs and drips.  I lost my appetite as I could not swallow which was due to the lack of saliva.  I was in for 5 days and came out even thoguh I had a bad headache.  As I said my GP diagnose a severe infection and put me on Antibiotics but it was a long time before I had IV antibiotics.  I then had a sinus op to clear out the infection.  It will be worth it when you begin to regain your figure.  Hope full like others you will sail through it all.  I hope your Gp comes back to you soon.  If not perhaps you could make an appointment to speak to her over the phone.  Enjoy your Disney!
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    • Posted

      Thank you again, she said she would ring me today, so as soon as she does I will update here. One thing I have found hard today was finding people asking questions then never updating if they had Cushing's after the tests etc. So I will be keeping this updated
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  • Posted

    So sorry to hear what you are going through! One of my biggest frustrations was waiting for test results or waiting for drs to decide what to do with me! I too had pituitary surgery but they didn't remove my pituitary gland just the tumour. Problem with me was that my results were inconclusive. Following surgery they decided I had an ectopic tumour which so far hasn't been detected! I was however given medication and slowly the symptoms started to reverse and I started to feel better. I have been on this for 13 years now and have an amazing endocrine team in Edinburgh who never stop looking for the tumour.

    When I was waiting for results and couldn't understand why they were taking so long one of the nurses explained that as the tests are sometimes very specialised they don't do them every day. I also know my bloods were being sent to different labs for testing so that all takes time. Try and be patient I know it's a scary time but it's important that they get the right diagnoses for you. Although I still have cushings I am well on the medication and am back working full time. Hope you get some answers soon! Take care smile

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    • Posted

      Thank you smile the doctor rang me around 1.30 this afternoon and said she had spoken to the lab, the results were above the normal range but not the higher end of abnormal (not sure what that means) and I didn't think to ask her what the number was but I will when I go to see her, she had rung the endocrinologist in cardiff, who said I need to do the dexamethadone blood test, and go for an in depth eye test, so the blood test is a week tomorrow, and I rang spec savers to book an appointment, and they asked me to go down straight away, I should have gone tomorrow because I already had a headache, they did the eye dilation drops and after the test I've had one of the worst migraines I've ever had! But my eyes are good, my field vision is also good, the doctor said that having blind spots can show a pituitary tumour or something.

      Do you ladies know what your 24hr urine results were by any chance? Thanks again for reading

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    • Posted

      Hiya glad you are having the dexamethasone test! My results were 800 at point of diagnosis. But the normal range is between 50 and 250 I think but don't quote me on that!

      I also had no problems with my eyes before surgery but still had a pituitary adenoma. Hope the waiting isn't too bad, at least now you are starting on the journey of testing for Cushing's!

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    • Posted

      I wish I had listened more to what my 24 hour test results were but I seem to think they were over 800.  I am really glad that you are now in the system for Cushings and thanks to Fiona for joinging in.  We all have such different experiences.  Take care and keep us informed.
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    • Posted

      I went for my eye test yesterday which is all normal, and asked the doctor for my actual results today, which is 146, and looking at some info on the 24 hour test I think I did it a little wrong, or rather given a little bit of a false reading, as I have 3 young kids and a very busy life there is no way I could do the test on a week day so took a lazy, relaxed Sunday to do the test, had a lay in until 9.30, and started my collection around 11am (forgot I needed to collect after the first wee, and did 2 more after that, then collected until 8am the next day as I had work, so thought its probably only 1 more wee I could collect anyway so will be pretty accurate, not realising that the high cortisol readings are in the morning. But there we go. I had a really really bad migraine after the eye test yesterday (I had a 9 day long migraine from the 14th of this month and I still have the pain behind my eyes/cheese bone area and base of my scull. Yesterday the pressure was so so bad that I was very close to going to out of hours, I get a migraine at least once a month around my period, but this month for some reason its absolutely awful. My doc doesn't have any appointments until the 12th of may so I've written her a letter to go with my depression questionnaire, telling about my head, maybe she can give me a new migraine tablet or something, and also telling her my concerns for my eldest daughter who is showing signs of Cushing's too. So need her to be tested. Thank you once again for your replies ladies, honestly your support really is helping me.
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    • Posted

      Hi, I had Adrenal Cushings, probably for approx 5 years. it took 7mths to get diagnosed and treated. Gp took a blood cortisol, then Consultant did a short dexamethasone suppression test, then a long one.They showed I had Low ACTH and high Cortisol, indicating an Adrenal source, so then I had  an abominal CT scan which showed a 2 1/2cm adenoma. I had to wait for surgery while I stabalized, taking Metyrapone to reduce my Cortisol levels. I had my left Adrenal gland removed last April. My right Adrenal gland has shut down, so I have to take 20mg Hydrocortisone daily. I feel so much better than this time last year. Recovery is slower than I would like, but it is still happening all the time! I hope you move swiftly through the diagnosis stage as you are really suffering with the migraines.Take care, God Bless.
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