Diabetes Insipidus. A decsription.

[von Spreuth]

O.K. From another thread, I mentioned, and was asked about, Diabetes Insipidus.

My form is Nephrogenic diabetes Insipidus (to give it the full title.)

This is a condition carried by the Mother, and passed on. Femails carry, do not get, male get, do not carry. In theory. (See later).

This means from the age of one day old, I was drinkinghg 2 to 3 liters of water per day. Now, at 47, it is between 10 and 15 liters per day, and in the hot weather, such as we have had here this week, CAN go up to 20 liters.

Of course, this must also be "dispossed of". I have never had more than two hours, maybe two and a half when really tired, sleep in my life. During the day, I must go to the toilet every 20 minutes to half an hour.

I was under Dr Taylor from the urology department of Liverpool Royal hospital, who confirmed the illness after two periods of a full weeks hospitalised tests.

My Great Grandfather had, what was then known as "drinking diabetes". At the time of my diagnosis, there were only four or five known cases in the U.K, and they were all my family, except for a family down South who had not had it confirmed.

My Uncle, Myself, and my Sisters two boys.

I said before that Women "only" carry. however My Sister, and the Daughter of my Uncle showed ALL the symptoms, and were drinking 5 to 10 liters per day.

However, neither of them would go for tests.

In Germany, the illness is much better known, and every Doctor knows of it.

WHY this should be so is unknown to me. At the time of my diagnosis I was told that ther was no medicine that could help. I am told by Doctors here, however, that ther IS now a medicine. But my case has been thrown into REAL confussion by the development of type 2 diabetes as well.

O.K. So, there are obviously great holes here that you may want answering and I have forgotten.

Please feel free to ask away.

Thankls for listening.

Ragnar.

 

[ChocFish]

Ragnar you have my sympathy, having to go to the loo this often would drive me bonkers, sleep deprivation must be the worst.
So how was your condition treated before you developed type 2, though sounds as if it was not treated at all or at least not very well or else you would not have to be drinking quite so much water? How do you control type 2 and if you take medication how does it affect the nephrogenic diabetes?

I have never heard of nephrogenic diabetes before, whats the German name for it? And how the hell do you cope generally, it must be so very, very difficult and almost impossible to lead a near normal life, I guess any trips, etc have to be planned around toilet facilities available, etc? Working and everything would be impossible I should imagine.

Are people with nephrogenic diabetes more prone to developing other forms of diabetes and is it possible for a type 1 or type 2 diabetic to develop nephrogenic diabetes too?

Sorry for all the questions, but I have never heard of this condition before.

I wish you all the best

Karen

 

[sugarless sue]

Here are some links about diabetes insipidus for us all to learn.


http://www.nhsdirect.nhs.uk/articles/ar ... icleId=631

http://www.prodigy.nhs.uk/patient_infor ... _insipidus

http://en.wikipedia.org/wiki/Diabetes_insipidus

 

[von Spreuth]

First off, thanks Sue. Good links. :wink:

So how was your condition treated before you developed type 2, though sounds as if it was not treated at all or at least not very well or else you would not have to be drinking quite so much water? How do you control type 2 and if you take medication how does it affect the nephrogenic diabetes?

No it was not treted. The british Doctors sais there was no treatment.

There IS for pituatry (sp) diabetes insipidus, but not for nephrogenic. OR there was not. Apparantly now there is, but because it is so rare, no one seems to know the effects of the treatment for the insipidus on the type 2. So they treat the type 2 with Meteformin (I do not know if that is just a German name?). Oraly any way. And just hope for the best with the other. It has not altered since my tests in Liverpool, so it is unlikely to do so now, and I am used to the lack of sleep, but it CAN play havoc when I am on early shift and have to be up at 03:00.

I have never heard of nephrogenic diabetes before, whats the German name for it?

They use the latin, the same name. (Or is Nephrogenic Greek? :?: )

And how the hell do you cope generally, it must be so very, very difficult and almost impossible to lead a near normal life, I guess any trips, etc have to be planned around toilet facilities available, etc? Working and everything would be impossible I should imagine.

Well. I joined the army in 79, and spent 99% of my 18 months to 2 years in depot whilst they tried to figure out WHY, when I could do all the stamina tests, when it came to running, I was nearly dead after the first half mile. After the 18 months, they gave up and I got a medical discharge with "unknown cause" in the description box.

Job interviews are VERY problomatic, due to the fact that even in the depths of winter, I overheat. I used to work on deck in the Arctic ocean in jeans and T-Shirt, and STILL sweat like Hel. So as you can imagine, getting all dressed up in collar and tie to go for an interview in July means I turn up looking like it is monsoon season.

Any physical effort in warm atmospheres, or even out doors on a warm day, and I am dehydrated, with all the problems that brings, after a very short time. (I could never do "spoprt" at school, for instance).

My favourite job was working on My Grandfathers trawler in the Arctic Ocean. NO problems with over heating there, and because my Uncle was his son, he knew about taking plenty of watehr for me to have during the trip.

Trips out. Yes they have to be arranged with drinking/toilet facilities in mind. Whilst there is nearly always a convenient bush, they tend not to sell bottld water. :lol: Going for a walk in summer is out.

Are people with nephrogenic diabetes more prone to developing other forms of diabetes and is it possible for a type 1 or type 2 diabetic to develop nephrogenic diabetes too?

Apparantly not. But then my Sister and female cousin were not supossed to get the symptoms either, so I will just say possibly too little is known to say for shure.

Sorry for all the questions,

NO problem WHAT so ever. :wink:

I wish you all the best

Thanks, and I wish you the same.

Ragnar.

Ahh P.S.

Another problem I have, and ANY one else will have. No matter WHAT they say, your medicle notes will NOT be transered out of country, and even if they are, the chances that any one in a none English speaking country can read them is so remote you may as well forget it. So, as far as they are concerned here, my Insipidus is not diagnosed, and now, as I said, it is complicated by the type 2. Basically "which effect is from which?".

 

[sugarless sue]

Hi Ragnar,found another interesting link which does mention drug treatment.

http://www.diabetesinsipidus.org/4_type ... nic_di.htm

 

[hanadr]

If this condition is X-linked, like haemophilia or colour blindness,it is possible for females to have it, but rare. the most likely case would be if their parents are quite closely related. i remeber reading in textbooks that womwnr carry haemophilia, but do not suffer from it, but i got curious and found a few

 

[von Spreuth]

If this condition is X-linked, like haemophilia or colour blindness,it is possible for females to have it, but rare. the most likely case would be if their parents are quite closely related. i remeber reading in textbooks that womwnr carry haemophilia, but do not suffer from it, but i got curious and found a few

Thanks for that. We were not closely related, well not by blood, the family was always VERY close, as friends.

But it does tend to indicate what we suspected.

As I said it is just a pity that neither of them would go for the tests. :?

And thanks again Sue.


Pretty friendly around here. 8) Not like many web sites I visit. VERY refreshing.

 

[sugarless sue]

Thank you,although we do have a few resident nutters!! :lol: :lol:

 

[ChocFish]

Hi again Ragnar
Thank you for answering my questions, I have looked at the links that Sue has kindly posted on here and I think that you are amazing, learning to cope with this illness and still battling on going to work, etc As you say there are toilet facilities and being a guy, there are bushes around ))

Since your diagnosis in Liverpool, have you ever asked for second and third and fourth and fifth and more opinions at all? Are you in touch with self-help groups or any organisation, like the Pituitary Foundation?

How is your type 2 diabetes being treated? One would think that there is something that can be done for your diabetes insipidus, its certainly some nasty, annoying illness, having to drink so much and sweating all the time, spring and summer must be a nightmare for you I am sure.

I have found these links, but you probably know about all of these already anyway.

http://www.diabetesinsipidus.org/
http://www.ndif.org/pages/36-Clinical_Trial_Underway
http://www.pituitary.org.uk/content/view/70/

All the best

Karen

 

[von Spreuth]

Since your diagnosis in Liverpool, have you ever asked for second and third and fourth and fifth and more opinions at all?

I have. But it is now coplicated by the type 2. They do not know which is an effect from type 2, and which from the other.

Are you in touch with self-help groups or any organisation, like the Pituitary Foundation?

Groups in general, no. Germany tends not to do "that kind of thing" hence I am here, and not a German discussion site (No hits in Germany at all for the illness....well not sites like here any way.)

Also Pituitary is no good as it is not that type. It is nephrogenic. (Kidney).

How is your type 2 diabetes being treated?

Meteformin 2000 Mg per day, oraly.

One would think that there is something that can be done for your diabetes insipidus,

There are many more cases in Germany than U.K. In fact MOST doctors in the U.K have never heard of it. And when my Sister had trouble with the school over her two boys (The school not letting them drink, or go to the toilet. To the extent of them turning the water off, and locking the doors, and giving the teacher a key so she could control what THEY considered was a "normal" amount of drinking and toilet going, to stop them), she was threatened with having them taken off her because they said it was some mentle illness wherby Mothers invent illnesses in the childfren to get attention themselves. But even in Germany, there have been so few tests on Insipidus it's self, but on people that have BOTH, I think I am the only one the University clinic here in Berlin has ever heard of, they have no idea of the side effects of the treatment for insipidus, with the treatment for type 2.

SO, because I am "used" to it, they are leaving it untreated.

As I said previously it has not altered since first diagnosed, so they assume it will not now.

I have found these links, but you probably know about all of these already anyway.

Ah No I don't.

Thanks.

Ragnar.

 

[Nellie]

An interesting and informative thread. No controversy!
On Sue's link they mention a newly discovered variety which is carried on an autosomal chromosome.( chromosome 12) This would affect both males and females. It is normally recessive and thus each of the children of the carrier mother and father stands a 1 in 4 chance of being born with NDI. And each of the children stand a 2 in 4 chance of being a NDI carrier. It is very very rare and there is also an even rarer autosomal dominant NDI.

A second genetic form of NDI has been discovered, although it appears to be more rare. In this case, the V2 receptor gene is normal, but the gene for making the kidney water channel, through which water is re-absorbed, is broken. Since this "aquaporin 2" gene is not on the X or the Y chromosome, everyone, regardless of their sex, has exactly two copies of this gene. In this case, an affected person has inherited a broken "aquaporin 2" gene from both of his or her carrier parents. With this "autosomal recessive" form of NDI, girls are affected as often as boys. A couple who has one child with this form of NDI generally will have a one-in-four chance (for each pregnancy) of having another child with NDI.

There are also abstracts of research papers on that site so you would probably be able to find the original research.

 

[von Spreuth]

There are also abstracts of research papers on that site so you would probably be able to find the original research.

That may be interesting in the fact I can not get my Doctors notes exported from the U.K.

I must look up my name and see if I am mentioned....na probably just a case number.

 

[ChocFish]

Hi Ragnar

I am horrified to hear you say that your nephews are being refused drink and not allowed to go to the toilet, and doctors just not bothering any more.

If I were you I would search the internet, english and american websites and just everywhere, there must be somewhere, someone out there who can help, maybe not cure but at least ease and control the symptoms to give you a better quality of life? Did you check out the links I posted earlier, there is some research going on.
I think you should start kicking up a fuss where doctors are concerned, I know in Germany many doctors are still of the old school 'I am the doctor, I have the knowledge and you are the patient', I almost lost my life because of that attitude, I lived at the time in Passau and consulted my GP as I felt a lump in my throat, I saw him on 3 separate occasions over 8 months and each time I was told 'its just nerves, you have only recently been bereaved, every nervous person has a lump in their throat' - I then moved across the border to Linz, consulted with a doctor there, I felt this lump worse than ever, I was told its just a swollen gland, have I had a cold recently, or something, I gave up as by then I was convinced that this lump may really just be in my mind, these quacks looked down my throat and couldnt see anything, felt my neck and hardly felt anything, so it must be right, huh?
Things got so bad that eventually I wasnt able to hold my head upright when swallowing, I wasnt able to eat solid food anyway, I was told I am paranoid and a hypochondriac and all sorts, its all in my mind, I was referred to a psychologist, this is where I met my second husband actually, he brought me over to the UK with him, I registered with a GP, in Yorkshire, I mentioned the problem with my neck, within a week I saw a specialist and another week and I had an operation, the lump had grown inside, pressing on my windpipe and gullet, it turned out that my "nervous lump" was thyroid cancer, my uncle is a lawyer, the doctors in Germany and Austria settled out of court...the Austrian doctor was banned from practising as he was involved in a similar incident before.

Just dont put up with any doctors supercilious attitude; if the UK doesnt release your medical notes, have you put your request in writing, go higher, write to some chief executive or whatever, but really the doctors in Berlin can do their own tests, they dont need the notes from the UK, surely? It sounds to me like they are dismissive and lazy, oh well you have had this condition for such a long time, why bother now?! It's just not good enough.

Gosh I wish I could somehow help you.

Karen

 

[von Spreuth]

Hi Ragnar

I am horrified to hear you say that your nephews are being refused drink and not allowed to go to the toilet,

WERE. That was 15 years ago.

If I were you I would search the internet, english and american websites and just everywhere, there must be somewhere, someone out there who can help, maybe not cure but at least ease and control the symptoms to give you a better quality of life?

Short of moving there, which I WILL not, there is no amount of research, or medicines that will help, if the local health service does not reccognise them.

Did you check out the links I posted earlier, there is some research going on.

Yes. But see my last answer above.

I think you should start kicking up a fuss where doctors are concerned, I know in Germany many doctors are still of the old school 'I am the doctor, I have the knowledge and you are the patient', I almost lost my life because of that attitude, I lived at the time in Passau and consulted my GP as I felt a lump in my throat, I saw him on 3 separate occasions.....

This is not quite the same thing. They KNOW there is help, they CAN give help. BUT they will NOT do so because they do not know if one has contraindications against the other.

Which, as far as I am concerned, is good enough.

Just dont put up with any doctors supercilious attitude;

I can rest assure YOU Madame, my Wifes Uncle, my House Artzt, and her Cousin one of the Kidney specialists of the renal investigation unit at the University hospital here, that I see, are FAR from supercilious, and I think an apology is in order there!

if the UK doesnt release your medical notes, have you put your request in writing, go higher, write to some chief executive or whatever,

I wrote to the Health secretary, I wrote to Blair, and the Health Ombudssmann. The answer was basically "Tough. We only release them to bona fidé Doctors". So will not answer me, and when my doctor gets in touch, is told "They are in English you would not understand them, so we do not send them abroad". (Talking of supercilious).

but really the doctors in Berlin can do their own tests, they dont need the notes from the UK, surely?

They HAVE done the tests, but the results are so messed up because of the TWO types, that no one knows where to start with them. Is it six liters per day because of type 2, and 4 liters because of insipidus, or the other way around. Was it type 2 all along? And not discovered because of the insipidus? or... or... To say nothing of the hydro nephrosis, which COULD have been brought about by the insipidus, or by the type 2, or COULD have caused the type 2, or COULD have caused the insipidus, if it was from birth (The Hydro nephrosis).

ALL of this has immense effect on treatment.

THEN how does the treatment for Type 2 inter react with that for insipidus. Well I have not got a couple of billion pounds to interest a drug company in doing the 25 years of tests, animal testing, human testing, approval procedures, licensing, etc, etc. And neither has my Doctor.

So do NOT blame the Doctors.

but really the doctors in Berlin can do their own tests, they dont need the notes from the UK, surely? It sounds to me like they are dismissive and lazy,

I can rest assure YOU Madame, my Wifes Uncle, my House Artzt, and her Cousin one of the Kidney specialists of the renal investigation unit at the University hospital here, that I see, are FAR from dismissive and lazy, and I think an apology is in order there!

 

[ChocFish]

and I think an apology is in order there!

Ok, ok APOLOGY, right here

Best

Karen

 

[von Spreuth]

Accepted. :wink: