I am from the West Midlands have had DI now for 16 years. Retired from the Fire Service 6 years ago. I can honestly say I never had a day off sick from work due to DI following diagnosis and it has never stopped me doing anything that I have wanted to do (including skiing for 2 lots of 3 months in Canada and qualifying as a ski instructor). Hopefully once they sort your medication you will have no problems. I am guessing you are on free prescriptions now, but if not apply for a medical exemption card (qualifying condition) and you will be. Have you done a water deprivation test? I did this, you dont have anything to drink and they measure your urine output. If you are peeing because you are drinking the urination will stop. If its DI you will continue to urinate although you are not drinking. They then gave me an injection of the artificial hormone and the problem stopped immediately.
Hi David thanks I'm on pension so no broblems getting Meds hoping to pickup tablets later today then got to work out how to come off current Solfenicin & start Desmopressin don't want to be on both at same time. Had quite bad Dehydration last & got to watch I don't over do the water intake. This site very slow today for typing.
Hi again not long been discharged from QA Hospital Cosham after Blues & Two Ambulance ride 8am Tuesday morning. Long story but basically very ill after taking only three 100 micro gram Desmopressin. Following loads of tests drips etc was admitted for care test & observation until discharged on Friday evening. Quite a frightening experience but felt safe & comfortable where I was and was disappointed to be shown the door. The level of care was excellent & staff should be commended for their efforts across the board & including the catering firm.
Am home for recovery & hopefully clarification on tests that are being carried out to determine if I have Diabetes Insipidus and as to which type. I have made my feelings clear on this but the Tech Lab are trying to be exactly correct on this & are currently not convinced? So back with more samples on Monday morning " if I have any energy left " as running on empty at the moment. Will be a good test for the experts at QA who I'm confident will carry out this task for me & my future care professionalsly.?
What my little space for further updates ?
Should I have started a new " Topic "
Appreciate all comments & assistance as this is a bit scary but so far I'm self managing by limiting my fluid input to 2.4 litres a day in blocks of 200ml per hour as & when required and as have neat regular 2 hour Urine trips this works out fine. Thirst glands at back if throat certainly give me enough earning when to sip water etc. So avoiding over hydration & trips back in an Ambulance.
As said I am self managing & teaching my Dear wife the joys off this condition for which I am totally 100% sure I got ?? But this time no Medication ?? Can help.
Apologies for rambling as it now only 0630 in the morning UK time.
Happy days 😫
Wish you all better things
Thanks goining through mini hell at the moment as I am not officially recognised with the condition until Blood/Urine samples submitted yesterday have been tested so self managing fluids at the moment & was working fine until this mornings increase in temperatures so going through another learning cycle with Fluid increase trying to avoid another espisode when have to call 111 emergency service for Dehydration etc. Hate being in Limbo.
Yesterday with Water fast From 8pm was also nightmare as Dehydration set in very quickly after 3am but as only had a few hours hung on until picked up by car & taken with my son to QA Outpatiens where with use of wheel chair my son got me to the important testing area. Following giving a sample of blood and urine I was able to have a small cup of & water and within a short period of time managed to re-hydrate very quickly although still had to use wheel chair to taxi to go home for rest etc. Hope nobody else will get what I have & yet to be diagnosed,
Will keep you all advised
Derek
They generally diagnose ndi by monitoring urin output levels along with checking your sodium levels as part of the metBolic panel in your blood. The urin always looks almost clear in high volume as if fully hydrated but the blood work reflects high sodium levels which means you are dehydrated. To diagnose whether you have central diabetes Insipidus (which is when the pituitary gland does not create the adh hormone) they start usually by administering vasopressin which is a synthetic form of the hormone. If you have this form you will have immediate results of hydration. If there is not an immediate response then the problem is caused by the kidneys not having the ability to respond to the hormone caused by a defect within the kidneys (which makes it nephrogenic) This is much harder to balance especially in young children. This is treated by using diuretics such as amiliroid, diuril and older times hydrochlorothiazide. In severe cases indomethacin may be used to decrease polyurea (excessive urination) which does this by damaging the kidneys. Please avoid indomethacin for your own sake. This drug causes kidney failure which we are now dealing with my boy.
I'm a genetic carrier which I did not know until I had my first boy. If you carry a genetic form of ndi the odds of a boy having ndi is 50/50. If a girl she will most likely be a carrier, but according to our doctor's do not receive the genetic mutation as bad or as often as boys. Signs during pregnancy were (self) very sick, gestational diabetes, fatty liver and extreme uncalled for dehydration. In fetus there were immediate signs of excess fluid in the kidneys. Pre-term labor at 28 wks, 31 weeks and born at 35. First signs upon birth was very rapid sudden weight loss in baby, as much as 2 pounds in first day of life. My son would become very red in slight heat. He was very colic. The biggest sign was after breastfeeding and draining me he was still "hungry" which now know was thirst. he would drink 8oz of formula from infancy every hr to two hrs and never seemed satisfied. At 4 mo the sodium built to such a high level 188) that he had seizures. I was initially accused of starving my child before I had to refuse treatment and forced transfer to a children's facility because I knew I was definitelu not starving my child, if anything he ate obscene amounts for his age. This change in hospitals made the world of difference. I requested a central line be put into an artery because drawing blood with high sodium is nearly impossible and he was being tortured as they stuck him over and over. This made routine blood checks much easier and lead to the diagnosis after they realized his urin was in large quantity and clear for his sodium levels. He was a big projectile vomit or. We now know this is because he was trying to Expell excess salt from the body.a according to our doctor this is a trait of all kids with ndi.
Don't know any other way to be a mom, so i wanted another child. Second pregnancy was the same. It was a boy so we knew our shot was 50/50. Same exact pregnancy. Gestational diabetes. Excess fluid in kidneys. Extreme contractions due to dehydration that I could not keep up with. Fatty liver. Very sick. Hospitalized for dehydration repeatedly. This time pre-term labor came abruptly at 24 weeks. Sadly, I lost him. I haven't had the opportunity to talk to other mothers that have had children with NDI. There are several warning signs that doctors can very easily dismiss as normal baby problems if they are not familiar with NDI (and in my experience here in new England, not many drs know what it is) so in my experience find yourself a child nephrologist and have them see the baby through first few months of life. Do not depend on a pediatrician because this is not a common issue.usually most children's bodies show definite clear signs by 4 mo or with first exposure to food.
Hi, I am from Birmingham. I had no problems for over 15 years and now all of a sudden there is a blip, dont know why. Still managing to get it at the moment. We should all get together for a day out and meet at a fountain! LOL
Well it had to happen - another bad turn early Wednesday evening the extreme heat over powered me so was back off to QA by Ambulace again ugh nightmare continued. Was well received at A&E & Young Doctor treating me had seen my symptoms before & was straight on my case. Family & I advised there would be long wait so family went home & left me A&E care. Aprox 6:30pm until 2:30am when I arrived in Acute Medication Ward & was we'll received & cared for for the next 2 days & once again discharged hopefully fully repaired on Friday evening, still with no clear diagnosis but recognition & hopefully formal tests to come.
Should really start my own post but sure you will understand I'm none too well at the moment.
Will update Friday to Monday events later as fairly tired now & this from my iPhone.
Derek
when my son needs iv fluids we have to order special iv fluids with a reduced sodium to .22%. Without this reduction any fluids given will only maintain a steady high sodium level. something to keep in mind? if not responding to the medication (which it doesnt sound like you are because your still dehydrated?) then the hormone therapy might not be for you. Response tends to be immediate. Issue could be in the kidneys, which is treated with diuretics instead. it took a hospital nearly a month before they made this connection with my son due to doctors being unfamiliar with the illness.
Hi meagan58879 hope your Son has settled down to the balanced fluids now. Me I'm still batting with mine and since my latest admission to Hospital have started developing Multiple Sclerosis (MS) symptoms as well for example my Skin has become very sensitive to changes in Temperature especially the recent Hot Weather we are getting in Southern England. To cooliof I am having to cover myself in wet towls have loads of Fans going & lately invest in a Portable Air Conditioning Unit I can put into any room I like. Have now been invited to meet the Hospital Endocrinology Team in Ocober so hopefully get some recognition started.
Derek
Hello, I have been having an excessive diuresis for sometime now especially at night. It's probably nearly a year since I had an undisturbed nights sleep. I went to the GP who referred me to an Endocrinologist who has diagnosed partial DI! I have the excessive output, some days up to 5 litres but I don't have the excessive thirst - granted I do get thirsty at night but it's manageable at the moment. I'm on Desmopressin nasal spray which I detest. The nausea after a few days of taking it is dreadful, so I stop and have an even worse diuresis and eventually go back on the spray and start all over again. I've tried the tablets but the nausea is worse. Sorry to go on but having a bad time of things at the moment that having found this site I've just let off steam and realise that although it's a rare disease there are others worse off than myself.
Nicholas
Sorry to hear you are having these issues Nicholas, hopefully they will get you sorted. I am really surprised that you are having the reaction to the Desmopressin, I have always desccribed it as like spraying a fine mist of water up your nose, no smell, no irritation, etc. I guess I am just fortunate. I am also interested to hear about your 'partial DI', never come across this before and can imagine its very easy to become de-hydrated if you are not getting the thirst. Dont worry about 'going on', that's what this site is for, to get things off your chest to people that understand.
Hi. I am in seek of advice to help my partner who has diabetes insipidus. He had to have his pituary gland removed due to a tumor. We recently had to switch from the Desmopressin spray to the tablets because none of the pharmacists near us could seem to get their hands on it and he would end up going days without which was unacceptable. We also ran into problems of not being able to afford it. It was coating us $191.00 a month and now we pay $75.00 a month for the tablets. I am hoping there is something out there that could help us with the cost of the medication maybe even an affordable insurance that is great for a person suffering from diabetes insipidus.
Hi David, do you have an endocrinologist? I also have diabetes insipidus from a head injury.
Hi Derek
Taking on salt helps keeps the blood pressure stable and maintaining fluid. I would eat 1/2 of one of those small little salt packages before I got the desmopressin spray. And even now I have to take salt on every day. I hope this helps and I hope you get a diagnosis and treatment soon. Tracey
Hi Tracey I too have had DI for 49 years from a blow on the head,just wondering what you use for ddavp. And what your symptoms are if you over dose. It's just neat to communicate with actual people,that understand some of the many unknowns and struggles,that we have had to figure out on our own. I had a post last night to someone about meds,even tho I know everyone is different. I live in Alberta Canada. Be good to hear from you
Thanks Rod
Hi Rod
We're neighbors I live in Vancouver BC. I take my DDAVP every night and interestingly my DI has gotten worse since starting treatment in 2009. I was extremely ill and in the hospital every other day for years for electrolyte replacement and IVs just to keep me alive until they found a diagnosis which took four years. Some of things I noticed about my DAVPR that occasionally I'll retain a lot of fluid and I'll have to go a day without it just to offload some of the swelling in my body from fluid retention. I also notice if I exercise that it wears off faster. And that it wears off very abruptly now like I noticed instantly when I'm out of faster present in my body. I still have regular blood test to make sure my lecture lights are stable as this is been an ongoing issue with hyponatremia and hypokalemia. It's been a long lonely Journey with diabetes insipidus. Until finding this blog today there was nothing that I found years ago when I was searching on the topic. And in Vancouver I think my doctor said he only ever heard of one other person that develop this for my brain injury and that wasn't until after I had developed mine. They had never seen it here in Vancouver before and had never run the test for it before as well. I'm so grateful to find other people that have developed it the same way. How are you now? Is your DI stable ? My doctor just told me last week for the first time that we finally have it stabilized. It's been a long journey I'm sure yours has been the same. I hope you're well and have lots of energy and can live the life you were meant to live.
Tracey
Hi
Sorry for that.
Same problem now I have.
So what are you doing?
You continue same plan,or how It is going with you?
My best regards
Not sure about insurance,but in Canada a drug plan with blue cross is about $100.00 a month.
But you may find if you desolve the pill under your tongue laying down it will probably work longer for you mine certainly does. Give it a try. 🤗