Years undiagnosed

Years undiagnosed

Postby member_42000 » Mon Sep 28, 2015 2:09 pm

Hi ,I'm going for 24 hour water deprivation test weds after having symptoms for years and being sent away time after time .ive got high sodium etc and wondered if anyone else got a load of wired symptoms .
Thankyou Sally x
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Re: Years undiagnosed

Postby Pat » Mon Sep 28, 2015 3:06 pm

Hi Sally
High sodium (hypernatraemia) can be due to excessive loss of water - dehydration. Other symptoms found in those with untreated DI can include feeling shivery, nauseous, irritable, headaches etc.
The water deprivation test should hopefully confirm if you have DI (or not). Let us know how you get on.
Our booklet about DI is at http://www.pituitary.org.uk/catalog/conditions-procedures/diabetes-insipidus-booklet/c-23/c-70/p-121

Good luck

Pat
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Re: Years undiagnosed

Postby member_42000 » Tue Sep 29, 2015 8:13 am

Hi pat,
I've downloaded the booklet thanks.all my other tests point to di so tomorrow will be the final one hopefully I've been this way for so long thought it was normal.i did 24hour urine test and collected 6000ml 3 containers ,didn't realise I was so bad.i just hope that I can get treatment and feel well again .
Thanx Sally .x
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Re: Years undiagnosed

Postby Pat » Thu Oct 01, 2015 8:10 am

Hi Sally


How did you get on yesterday with the test?
hope all went ok and it wasn't too awful for you.

Pat
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Re: Years undiagnosed

Postby member_42000 » Thu Oct 01, 2015 11:47 am

Hi ,to be honest it was unpleasant I was ther till 6.30 in the evening and the lab did not get the results back throughout the day as expected.by the time I got there I'd been to toilet five times between 7 and 8.30.i now have to wait till I here something or see the consultant on October 12.
Thankyou for asking
Sally .x
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Re: Years undiagnosed

Postby Pat » Thu Oct 01, 2015 2:36 pm

Sounds very hard Sally, it's really not the pleasant of tests!

I was fortunate with mine that the lab had the results quickly - I can still see the endocrinologists walking down the ward punching the air saying "We've got one!" I think endo meant they had got a DI patient diagnosed......
I was given desmopressin by injection soon after and felt a lot better.

let us know how you get on

Pat
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Re: Years undiagnosed

Postby member_42000 » Thu Oct 01, 2015 5:22 pm

Hi pat ,will let you know how it goes ,my other tests all point to di but it is a bit random symptom wise.my mri scan does to,it's so frustrating as I'd already been toilet 5times before I got there .
Thankyou Sally x
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Re: Years undiagnosed

Postby member_42000 » Thu Jan 07, 2016 11:40 am

Hi all ,
Still no treatment had a more in depth test which shows I'm permanently dehydrated and I can't hold fluids in I'm losing about six litres ,it's pointing to nephrogeniic di I just wonder how much longer I'll be left this way.by the end of each day all I can taste is salt my hands and face are numb sometimes shivers etc irritable etc what do Ido ,I see endo 18th Jan was due a concluding test today but it was cancelled feeling dreadfull .
Sally x
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Re: Years undiagnosed

Postby Pat » Thu Jan 07, 2016 3:35 pm

Hi Sally
this must be dreadful for you. can you email me pat@pituitary.org.uk with brief history so I can get our DI expert to help. thanks
Pat
 
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Re: Years undiagnosed

Postby Carl » Fri Jan 08, 2016 10:46 am

Hi Sally, this sounds horrible. I had DI for a short period (about 3 months) after my pituitary tumour removal in 2013. Thank goodness the DI went away on its own. But I had all the symptoms you describe, although not drinking and weeing quite as much - it just sounds like you are SO classic DI....it must be so frustrating not getting diagnosed and treated. I was lucky in that I was diagnosed quickly and given desmopressin tablets which just stopped the symptoms overnight.....I then tapered off the drug gradually and as I said the DI went away. The Endo said mine was 'transient'.

I hope they get you sorted soon, DI was the worst bit of all the issues I went through, hated it and I really feel for you - perhaps if you deliver 6 litres to them every day, they may get the point.....there is a slightly rude pun in there somewhere about 'taking the "mickey" ' :)

Cheers, Carl.
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