Diabetes Insipidus: Hi Anyone been diagnosed or... - Behçet's UK

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Diabetes Insipidus

Dogwind profile image

Hi

Anyone been diagnosed or suspect they may have Diabetes Insipidus?

I am currently under investigation for such. There is a recognised link with auto immune diseases. Yet another symptom to add to my list.

Take care and stay safe.

5 Replies

Hi there, I haven’t been diagnosed with this - and actually hadn’t heard of it before until your post! But this is hugely interesting for me because I always suffer with dreadful thirst, and I drink a LOT of water. It’s been worse over recent years as has my BD. My bloods usually show a few different markers indicating mild dehydration, and annoyingly I’m always just told to drink more… but I’ve never been tested for it. I’d be really interested to know how you are being tested if you’d be happy to share (I think from a quick read it’s maybe blood tests?) but either way, thanks for mentioning this and sorry to hear you have something else on your list as you say.

Dogwind profile image
Dogwind in reply to Mrs-Champers

PM sent.

My symptoms started with a flare and have started subsiding slightly as the effects of the flare are gradually reducing.

I only found out about DI through my own research. When I contacted the Behcets Clinic the nurse said shed never heard of it, but told me I probably had Diabetes Mellitus so go to my doctors for a blood/urine test.

Whilst the connection between Behcets and DI is known it is a combination of two relatively obscure conditions coming together, so understandably little known.

I have had to provide numerous urine/blood samples. Medically the doctors need to eliminate the more common form of diabetes.

I have also supplied fluid input v fluid output data. If going to your doctor it might be an idea to arm yourself with this data to help your case, I did mine over five days, measuring exact ins vs outs and timings of each.

Interestingly, for me anyway, regardless of how much fluid I put in the output volume per urination remained relatively constant just the frequency increased/decreased.

I have now been referred to an Endocrinologist for further investigation.

Tests used to diagnose diabetes insipidus include:

Water deprivation test. While being monitored by a doctor and health care team, you'll be asked to stop drinking fluids for several hours. To prevent dehydration while fluids are restricted, ADH allows your kidneys to decrease the amount of fluid lost in the urine.

While fluids are being withheld, your doctor will measure changes in your body weight, urine output, and the concentration of your urine and blood. Your doctor may also measure blood levels of ADH or give you synthetic ADH during this test. This will determine if your body is producing enough ADH and if your kidneys can respond as expected to ADH.

Magnetic resonance imaging (MRI). An MRI can look for abnormalities in or near the pituitary gland. This test is noninvasive. It uses a powerful magnetic field and radio waves to construct detailed pictures of brain tissues.

Genetic screening. If others in your family have had problems with excess urination, your doctor may suggest genetic screening.

(mayoclinic.org/diseases-con...

Treatment depends on which type of DI you have.

Update to follow.

I would be interested in learning what yours and Mrs-Champers symptoms are if you wish to share.

I was advised by my very experienced GP my excessive output was due to my body being in pain and adrenal fatigue, I have read quite a bit on this now, the following might be helpful:

drlamcoaching.com/blog/freq...

When I was in hospital in 2018 I mentioned this to a young Dr assessing me for chronic pain who said he had never heard of this.

We live in a world where we certainly have to try and manage so much associated with this condition as well as what appears to be lots that is not known or even considered.

Dogwind profile image
Dogwind in reply to gillianTS

Hi Gillian et alMy symptoms are pretty reflective of the condition but not as extreme as they can be.

The main symptoms, thirst, mostly for cold drinks and excessive urination.

The difference between DI and the other diabetes, certainly in my case, is not just the frequency of urination, about 12+ times a day and up to three times during the night but the volume. The average person urinates about 5-6 times per day. Extreme DI can be 20+ urinations in a day.

If your condition is serious and you drink a lot of fluids, you can produce as much as about 19 liters of urine a day. A healthy adult typically urinates an average about 1 to 2 liters a day.

I am passing on average 210 ml of urine at a time whereas the average is 300 - 400 ml.

Interestingly, or not as the case may be, the volume remains fairly constant regardless of fluid input, it's just the frequency that declines.

I find it a constant balance between managing the number of urinations and trying not to get to dehydrated, though find I am dehydrated to some extent most of the time.

Interesting link, thank you.

gillianTS profile image
gillianTS in reply to Dogwind

Thank you for explaining your symptoms. I have never measured the volume but certainly go to the bathroom lots and at least 3 times in the night. I will be interested in learning how you get on with your appointment.