How do I go about getting a diagnosis for DI

How do I go about getting a diagnosis for DI

Postby member_40069 » Thu Jun 20, 2013 5:56 pm

I am fairly new here. I have had unexplained weight issues all my life, the biggest increase was just before my fortieth birthday, when my body ballooned from thirteen stone to a massive twenty two within a year. I developed yellowing around the eyes and a perpetual thirst, I was tested for type 1 & 2 diabetes, that came back normal. At the same time I developed an enlarged prostrate and put on the relevant medication. For many years I have been backwards and forwards to different doctors about weight loss, I have tried different diets and placed on xenical to no avail, at one time my weight increased whilst taking xenical.

Recently I have been referred on to a cardiac specialist at my own request, enduring a echo cardiogram to find some answers why my legs were swollen and painful. I was diagnosed as having venous insufficiency and prescribed class 2 compression hosiery for my legs. From this I have just seen a urologist once more and now been diagnosed with chronic venous insufficiency, due to the edema being over most of my body. I have been prescribed furousemide tablets as I was urinating about a litre at one go at night, nobody knows what is causing this and I have also been prescibed desmopressin, but I am awaiting further tests for this. I have been referred onto a endocrinologist at my own request and I am awaiting an appointment.

I always have a very sore tongue and continually biting it, when I look in the mirror it looks quite big and with indents around the side. How do you go about getting tested for di? My mother and her family suffer the same symptoms as me as well as the disfigurement, unfortunately most of them are dead now but some of my cousins display the same traits. I have lost a quarter of my lifetime to this condition, I have difficulty walking and find it difficult to find clothes that are comfortable. The worst thing is i have children and my daughter only got married two weeks ago. Does anyone have any advice please? I am 55 and live in Bristol uk.

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Joined: Thu Jun 06, 2013 12:48 pm

Re: How do I go about getting a diagnosis for DI

Postby plum » Fri Jun 21, 2013 6:22 am

so sorry to hear about what you have been going through.
not sure if this is of any help but the confusions and bewilderment all sound very similar and i am probably not the person here who has been through it...
I hope that your appointment to the endocrinologist is very soon. in the meantime i would suggest that you prepare a sort of 'timeline' of your symptoms, however bizzare and minor they may seem to you eg when did you notice tiedness starting /enlarged tongue, when did weight gain start. what about rings / gloves? do you have photos from eg 10, 15 years ago to take to the appointment also so as to provide evidence of changes?
wishing you all the very best and hope that you get correctly diagnosed very soon. if it is a horrid diagnosis the only 'good' thing that can be said about it is that the correct treatment can then start.
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Joined: Tue Nov 09, 2010 9:41 am

Re: How do I go about getting a diagnosis for DI

Postby Pat » Tue Jun 25, 2013 1:21 pm

Hi Andy

the most appropriate test for diagnosing DI, is the water deprivation test. When you see the endocrinologist, this test may be advised and a full history taken and other pituitary hormones looked at.

Plum rightly suggests the things to prepare for your appointment which will be very helpful.

Please let us know how you get on

take care

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Joined: Tue Sep 07, 2010 2:25 pm

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