Diabetes Insipidus - has anyone else got it?

Hi, i've suffered for a long time with dehydration when running.  After almost a year of feeling really ill; imense dehydration along with fatigue, dizzy spells, chest pains, palpitations, muscle weakness and huge amounts of blood tests and urine tests, i've been told i have Diabetes Insipidus; which means I'm thirsty all the time, and drink around 5 litres of water on a good day, about 8 on  a bad day,  but it's flushing straight through me.

Diabetes Insipidus is in no way similar to Diabetes Mellitus (the one to do with your blood sugar). My body cannot retain fluid so as soon as i drink it comes straight out. And all the symptoms of feeling weak and dizzy and the palpatations are due to the constant drinking flushing out my electrolytes; potassium, magnesium etc.

I'm waiting to go into hospital and hopefully get some treatment of some kind, but i've been told there will be a few months wait due to the bed shortage!  in the meantime i'm struggling with hydrating myself enough for a run - if i drink loads just before and/or during i end up wetting myself! but if i don't then i have a huge headache and my body feels hanging and a 3-miler feels like a marathon.

does anyone else have Diabetes Insipidus? or can you suggest anything? (.....apart from Tena pants!)!

Hi Naomi,

Have you been in contact with the Pituitary Foundation? Can't say thet they'll be able to advise you re. running, but they are a fantastic resource for information on endocrine conditions such as diabetes insipidus.

Have you seen an endocrinologist? I'm surprised that they'd leave you for so long if you're having such severe symptoms?! Obviously I don't know the whole story, but there are treatment options you can explore with your GP without having to wait for a hospital bed! Phone the Pituitary Foundation and get some proper advice so you know where you stand. Good luck!

Thanks Sarah - i'll contact them.

I've seen an endocrinologist,; waiting for next appointment to go in for a full day of water depravation testing and MRI. But it's doing my head in not running at all!

My GP has been the least helpful person over the past year so i'll contact the Pituitary foundation. Thanks xx

Hi Peter, I have reall good days and then really bad days, so i try to get a short run in when i physically can. But may you're right - until i have it under control maybe i'll stick to power walking.

My GP has all along said that all my symptoms are "probably due to stress" and that exercise will help - she's made that assumption without one question about my lifestyle or my job. or even asking me if i am stressed about anything! I had to find out about DI myself and requested specific blood and urine test myself! It took a whole year to get to see the right specialist. If it wasn't for the fact that i'm quite pushy, i'd probably have been prescribed anti-depressants and told to leave!!

Thnaks Peter

x

Not been given desmopressin as i'm still waiting for the appointment to see if desmopressin will work.

I justr wondered if anyone else had it and managed to run as normal?? It's so rare i've not met anyone else yet who knows about it, let alone who has it!

Hi Naomi,

I have to say, until you're condition is stabilised, I doubt very much that you'll be able to run as normal. Running well (and healthily), and any physical activity, depends so much on adequate hydration that you'll probably struggle to do it and not feel like crap during and afterwards.

Did you phone the Pituitary Foundation? Like I said, they'll probably be the most helpful source of information. Where abouts are you? You can always ask to be seen at another hospital if their waiting lists are shorter. If you have got an appointment, or know the name of the endocrinologist you'll be seeing, try phoning the secretary and asking for a short-notice appointment (assuming you can attend at short notice). That might be a way of hurrying things along.

So is the diagnosis definitely DI without doing the water deprivation test?  I occ see the condition in dogs, but the definitve diagnosis is made by doing a water dep test and seeing whether you concentrate your urine or not (come see me, you won't have to wait several months!)  and then treatment is with DDAVP (desmopressin) nasal spray.  

What are they looking for on the MRI?

i've done an overnight water depravation test and my body doesn't concentrate urine. the tests in hospital are over a whole day to see at what point my body will concentrate it; tests every hour for a full day.

The MRI is to then check if there is a tumor in the pituatry gland ; if not then the problem lies with the kidneys.

Still not found a person who has DI.... but i'm a step closer with a dog!!

See this is where medics and vets would take a totally different approach I guess.  I would trial you on DDAVP and see if it helped.  If it did - fantastic!   But I guess they are wanting to do everything by the book, which is fair enough, it's just a shame you have to wait so long.

My husband had paralysis of his laryngeal nerve last yr (one of the nerves controlling his voice box so he was hoarse and could barely whisper - was fobbed off by GP for weeks saying it was laryngitis)  I was really impressed with how fast he had all the tests done after he saw the ENT people.  Within a wk he'd had x-rays, MRI, CT, endoscopy - you name it they did it!  But I think that's beause one of the things that can cause it is a tumour in the chest pressing on the nerve, which is obviously bad news.  All the tests came back negative and it was presumed to be viral, and several months later his voice came back.

I'm guessing if it was a pituitary tumour it would be benign, which is why they don't appear to be overly worried and speedy.

The water dep test we do in dogs is the hourly one - great fun trying to get them to pee in a pot every hr!

I can imagine!

If i don't get my appoinment soon, i'll go and pester a vet! xx

I'm In Bristol - my GP says they cant do MRI's. Everyone i know of in Bristol who is waiting for any kind of hospital attention is waiting ages too. I waited 7 weeks to see the specialist from when my GP asked for an URGENT appointment, the other hospital couldn't see me for 12 weeks - so it was the best of my crap options!

the specialist said i should get a letter through within two weeks from when i saw her- that's now - but she was doubtful that the apppointment will be very soon.

Obviously there are  a lot of ill people where i live!

Hello,

I just picked this thread up because I track all mentions of pituitary foundation via google alerts, I don't run and frankly have no interest in doing so, but I do have DI amongst other things and live in Bath and see Docs in Bristol... I echo the coments above, WTF!!! You should not be being treated like this, I think the only problem is that you haven't yet seen a consultant that understands what you are having to deal with.... you should get in touch with me by phone and I'll try to help out.

I am a member of the pituitary foundation and whilst they are great for info it will be you that needs to push hard to reach the right people...

I just created an account on this forum so I could answer your question but am not likely to visit it again, get in touch on clairethatcher[@]yahoo.co.uk

Cheers, Claire

Hi All,

I have had DI for fifteen years, since I was eleven years old. I am a writer and I'm writing a book about DI. I am mixing my own personal experiences with the condition with research and interviews. If you would be available to do a virtual interview, I would be so grateful! Please email me at kennykruse@gmail.com if you might be interested. Thanks, and have a wonderful day!

Take care,
Kenny

Hi, I've had DI for 17 years and am a fit, healthy and active man. It's an inconvenience but doesn't stop me from doing anything. Water retention and desmotab dose can be tricky to equalise, let me know if I can offer any other advice. 

Kevin