Diabetes Insipidus

Lagnagoushee

I have recently been diagnosed with diabetes insipidus and would like to get information regarding the condition and to talk with others living with the condition. thanks

graflynn

Welcome to D world. There are a couple of support groups around the country and the Diabetes Federation of Ireland would have contact details for them. I only have the detail for the Diabetes Support group in Ennis, Co. Clare which is 087 641 5747 and clarebranchdfi@gmail.com

Here is a list of websites and useful books which have been recommended as good sources of info from said group above.

Hope it's useful!

Websites



www.diabetes.ie Diabetes Federation of Ireland
www.itsmyinsulin.ie Irish educational website

www.d1.org.au Australian Diabetes Community
www.diabetes.org.uk UK Diabetes
www.diabetesmine.com Diabetes Blog
www.diabetes.org and http://forecast.diabetes.org/ American Diabetes Ass.
http://www.diabeteshealth.com/
http://www.diabetesselfmanagement.com/
www.dlife.com and
http://www.dlife.com/diabetes-forum/
http://www.diabetesforums.com/forum
http://www.diabeticconnect.com/
http://www.diabeticlivingonline.com/
http://www.diabeticmommy.com/
http://tcoyd.org/blog/articles/
http://www.childrenwithdiabetes.com/
www.irishhealth.ie
www.diabetes.ca Canadian Diabetes Website

www.accu-chekteams.co.uk Website for children & teens.
www.diabetesconnect.com



Books
- Diabetes: A Practical Guide to Managing Your Health (Hardcover)
Jill Rodgers (Author), Rosemary Walker (Author)

- 50 Secrets of the Longest Living People with Diabetes (Marlowe Diabetes Library)
Sheri R. Colberg (Author), Steven V. Edelman (Author)

- Diabetes for Dummies by Dr. Sarah Jarvis GP & Alan L Rubin, MD

- Diabetes Living, The Will to be Well
Christina A. Staccia.

- Outsmart Diabetes
Rodale books ISBN 1-4050-9338-2

- Insulin Pump Therapy Demystified (An Essential Guide for Everyone Pumping
Insulin) by Gabrielle Kaplan-Mayer

CramCycle

Lagnagoushee wrote: »

I have recently been diagnosed with diabetes insipidus and would like to get information regarding the condition and to talk with others living with the condition. thanks

Sorry to be so direct but I've never met any one with Diabetes Insipidus and would be fascinated to hear more about it from someone with it rather than papers that don't give much details. Obviously only if you don't mind sharing any info would be greatly appreciated.

Crasp

I too am quite interested to hear your story, from a medical standpoint. I have never met anyone with Diabetes Insipidus.

Sorry I can't offer any support

Lagnagoushee

don't know much about it either, other than I've got it as a result of a pituitary adenoma. I have read some information about it on the following site but would like to chat with someone who has the condition so that i can find out what's ahead of me.

http://www.pituitary.org.uk/content/view/41/52/

robertbradyjnr

Hi , I was diagnosed with a Pituitary Tumour 20years ago & had surgery to remove it, as a result of the Tumour my vision is impared, I'm on hormone Replacement Meds for life & also have diabetes insipidus, there are different forms of Meds for d. Ins, from Desmopressin Nasal sprays, Desmotab melts & Nordurine tabs, I think with D.i you can change your dose of Meds , as & when u need to , well that's what I find, there are very little or few side affects associated with D.i , apart from Dehydration & fluid retention, if you'd like to know anything else feel free to ask

sting60

I know this is an old thread but I have had the condition since 1965.I have spoken over the years to young doctors about same.If anyone needs info please contact me on stvbk60@gmail.com.

chatterbox

I know this is an old thread... my son just got diagnosed with Congenital nephrogenic diabetes insipidus, just wondering if anyone knows anybody with the condition. I would be interested in getting in contact to get some information on the day to day challenges faced with the condition.

TherapyBoy

chatterbox wrote: »

I know this is an old thread... my son just got diagnosed with Congenital nephrogenic diabetes insipidus, just wondering if anyone knows anybody with the condition. I would be interested in getting in contact to get some information on the day to day challenges faced with the condition.

I'm not too sure if there are any differences between treatment for nephrogenic (kidney based) D.I. & neurogenic (brain based) D.I. Most people I've heard of who suffer with D.I. (including myself) do so as a result of some sort of pituitary brain tumour.

In my own case, I'm taking a drug which keeps my symptoms under control pretty well. I take it as I need it, during normal times one tablet every 2 or 3 months works for me but immediately after surgery I can have to take 3 or 4 tablets per day. As I recover I can slowly taper off them, over a period of maybe 2 months. As I understand it, every case is different & other D.I. patients will have different stories regarding their own medication needs. The best person to talk to in depth about medication would be the nephrologist your son is attending.

I hope my post helped in some way. If you have anything you wish to ask me just reply here or feel free to PM me.

chatterbox

Thanks for the info TherapyBoy, glad to hear you are doing good.

My son has the nephrogenic form so the med's and lifestyle etc. would be quite different to your neurogenic form. Very few people seem have the nephrogenic form, so very little info out there.

Our consultant has been great with us so far, and gave us all the medical info, but again getting info on the real life day to day experiences is hard as the cases are few and far between.

Thanks again.

DInsipidus

Ive very recently been diagnosed with DI and hope to be prescribed medication on my second visit to consultant- I realise every case is different but is there any great difference having injection,nasal spray or tablets?

TherapyBoy

I used to use the nasal stuff when I was young but they moved me onto the DesmoTab 120 about 10/15 years ago, it’s a small thin tablet than melts quickly under your tongue. Very easy to take & it comes wrapped individually in a little silver metal pouch you can easily carry with you if you’re going to be away from home when you need to take it.

Your consultant will prescribe what works best for you. The DI meds are very easy to take, only one I ever had a problem with was Nordurine tablets which made me hallucinate.

Cairo81

Hi all, l was diagnosed with Diabetes insipidus nearly 4 weeks ago, after surgery to remove a very small tumour on my pituitary gland....my "DI" did not develop until a week post op....My Endocrinologist says it's for life, finding that part difficult to take in...neither Endocrinologist or Neurosurgeon ever mentioned this complication....l take 3 tabs a day, left home from hospital with a prescription and work away on my own....l joined 'Got Diabetes insipidus ' Facebook group which has been invaluable to me also the Pituitary Foundation of Ireland and UK have decent information.....anyone ever get better, l can always hope 🙏

TherapyBoy

Sorry to hear it Cairo, quite a common side-effect of pituitary brain tumours.

It can often settle down a bit after surgery, I always needed to take the Desmotab drug more often just after the operation but I’ve been able to maintain on 1 tab a day now for a while (it used to be one dose every 2 or 3 months before a flurry of surgeries & issues in 2018/2019). There’s no set dosage for these drugs, it’s really a ‘what works best for you’ kinda thing so if you have some time at home to test things you could try reducing yourself to 2 or 1 tab a day & see how it goes. If it’s not enough you’ll notice very quickly a sudden thirst coming on or the need to pee every 15/20 minutes etc. The tabs (if you’re using the same ones as myself) are individually sealed and they get to work quickly & it’s easy to have a couple on you for emergencies.

It sucks, but it just means a little bit of extra forward planning. If I’m travelling anywhere I’m conscious of needing access to the toilet about once every 2 hours, & using the toilet whenever there’s one available to keep everything comfortable (you’ll be able to work out your own time-period for travelling etc). I’m just home from a week long road-trip from Bilbao across northern Spain & down the length of Portugal with no issues, in planning out the route I could insert breaks along the way.

The endocrinologist might recommend cutting down on your alcohol intake if you drink at all, regulating how much you drink can be difficult when there’s no limiter on your thirst & it can also be very easy to dehydrate yourself even while drinking lots of pints just by its nature. It’s important to keep yourself drinking a consistent amount of water every day, at the same time not overdosing yourself with the stuff. I keep a rotation of bottled water in the fridge (Volvic is good if you can get it, so soft & easy to drink) so there’s always a nice cold supply for myself when I’m home.

It sucks, but you’ll get around it! Hope everything else with your recovery is going well!! Welcome to the Brain Tumour Club! 🧠

Cairo81

Hi TherapyBoy, thanks for replying to me...yeah it's alot to take in...l am currently at home so trying my best with tablets to see how l go....glad to hear you are just back from holidays, we are due to go to Portugal in a month for 2weeks, l was going to cancel and then l thought why should l let this condition ruin our family holiday...l have decided to cut out alcohol, at the moment l am not confident enough in myself to be able work around it correctly..l currently drink about 1500 to 18oo mls per day...just water and a cuppa with my lunch..its working OK, l am lucky so far, l have no great thirst ....my Neurosurgeon told me Saturday my hypothalamus and Pituitary stalk were not touched during surgery, so my posterior lobe is damaged, l will live on hope that it may repair in time....