Diabetes Insipidus

[Pino]

Today i got the results from the water deprivation test i did two month ago in a clinic.

It shows mostly clear i have got Diabetes Insipidus Centralis, explaining my permanent thirst and high output of urine.
I do drink 5000 to 6000ml a day and the combination with incontinence is just problematic, as you all can imagine for sure.

Now i do need a doctor prescribing me Desmopressin, i already asked my family doctor and my neurologist, both won't do it, i need an endocrinologist for that. We have got only one in our town and the next one beside him is really far away. He can not see me before August next year.

This is just bad news. At the moment i have got no other idea what to do.

I do not need advice, i just wanted to get rid of my little frustration.

 

[slimjiminy]

I can only imagine how long it would take here in Canada. August is a long wait, but we have a genuine health crises here.

 

[CheshireCat]

During my last appointment with my urologist I brought up that my libido is through the roof, in spite of being 68, a two times prostate cancer survivor (surgery @ 54, radiation @ 58), testicular cancer survivor (surgery @ 60), complete ED since 40, widowed, living alone, and not dating. I'm hornier now than when I was a teenager, but now it's difficult to take matters into my own hands . The doctor ran a hormone panel and my testosterone came back normal, but my FSH (hormone that stimulates sperm production) was raised. Strong indicator of a benign tumor on the pituitary. He referred me to an endocrinologist.

The endocrinologist couldn't see me for 6 months. A month ago, on the day I was to see him I had a slight cold, so I called to postpone the appointment. The appointment got pushed back by another 6 months! One year to see a doctor is ridiculous. Being this horny is ridiculous.

Once were through the holidays I'm going to see if I can see an endocrinologist in the next city over, about 45 minutes away.

I do not need advice, i just wanted to get rid of my little frustration.

Ditto!

 

[Tasmaniandevilpadded]

My first time I got a diabetes before basic metabolism bloodwork. My glucose level is high when I was in emergency room due hypertension. I thought drinking a soda was years ago.

 

[Pino]

My first time I got a diabetes before basic metabolism bloodwork. My glucose level is high when I was in emergency room due hypertension. I thought drinking a soda was years ago.

Diabetes Insipidus is completely different from Mellitus, but even a lot of doctors mix that up.

 

[Bigbabybret]

So, im not a Dr. and didnt even stay at a Holiday inn....

But if you know the amount/qty you need, sometimes its cheaper to order it yourself.

On-Line Pharmacy

All depends on your situation, local laws and alike.

But getting some meds there are cheaper than copay from insurance.

 

[mickdl]

Now i do need a doctor prescribing me Desmopressin, i already asked my family doctor and my neurologist, both won't do it, i need an endocrinologist for that. We have got only one in our town and the next one beside him is really far away. He can not see me before August next year.

Hi Pino,

if you are a „GKV“ customer, it‘s regulated by law that the health insurance have to provide a date with the doc in time. Each federal state have it‘s own „Terminservicestelle“. Just call them and they will help you to find a specialist that is available in the next 4 weeks:

Terminservicestellen der Kassenärztlichen Vereinigungen - Krankenkassen.de

Terminservicestellen verhelfen gesetzlich krankenversicherten Patienten innerhalb von vier Wochen zu einem Termin bei einem Facharzt in der Nähe. Hier finden Sie die Telefonnummern.

www.krankenkassen.de

 

[Pino]

Hi Pino,

if you are a „GKV“ customer, it‘s regulated by law that the health insurance have to provide a date with the doc in time. Each federal state have it‘s own „Terminservicestelle“. Just call them and they will help you to find a specialist that is available in the next 4 weeks:

I am not able to drive very far on my own. The next Endocrinologist is not around the corner, i already wrote to two different University Clinics, with no success. The text to that is it has to be specially urgent "besonders dringlich", i do not see that happen, i "work" on this for over a year now.
It all could be done in two weeks.

Perhaps i will give it a try, just to see how that works out. At the moment i asked for an appointment with my Nephrologist again, who thought my problems are just psychosomatic. I will wait for this one first, it is at the end of January. I do hope to get the prescription, and perhaps my urologist will do that either, that appointment is in February. We will see.

At least the diagnosis is very sure now. No more discussing about: "You just drink to much, your bladder is O.K."
Beside my NDO, let me see someone pee about up to 8000ml a day with a 300ml to 400ml bladder not complaining about it.
I literally need to pee all the time. Sometimes i use a permanent catheter for one or two days just to get relief.

I drink that much for at least 7 years, never went to a doctor for it, even when my bladder problems started and it hurt a lot, i did not see a doctor in three years for it, just biting myself through - until i peed my pants.

At that point i went to an urologist and the first thing he said was: "It is not that bad" and later "It is all in my head", beside the statement above.

 

[Pino]

I got an appointment at the endocrinologist in July. Earlier than i expected.

They asked me a bunch of questions on the phone and were confused i did not get Desmopressin already from the clinic or my family doctor.
When they heard the clinic recommends a "saltwater infusion test" they were stunned the clinic won't do it by themself.

Seems to be a hard way again.

 

[mickdl]

Hi Pino,

It's good that you got an earlier appointment - but - excuse me for asking - was a desmopressin test done in the clinic?

This is actually needed to differentiate between central and peripheral diabetes insipidus. Desmopressin is contraindicated especially in case of high water intake (which you are doing right now). As long as it is not clear whether the stuff really works - it is actually clear that no one wants to prescribe it - because it can lead to water retention and seizures if it is the wrong type of diabetes. This is also the reason why it is normally only tested on an inpatient basis.

 

[Pino]

Hi Pino,

It's good that you got an earlier appointment - but - excuse me for asking - was a desmopressin test done in the clinic?

This is actually needed to differentiate between central and peripheral diabetes insipidus. Desmopressin is contraindicated especially in case of high water intake (which you are doing right now). As long as it is not clear whether the stuff really works - it is actually clear that no one wants to prescribe it - because it can lead to water retention and seizures if it is the wrong type of diabetes. This is also the reason why it is normally only tested on an inpatient basis.

Hi Mick,

they did a combination of the WDT with Copeptin measurement before and after Desmopressin.

I got the results and stats and (for me) it is clearly a partial DI Centralis, between moderate and severe, nut not total.
My urine osmolarity is about 328-355-307-339 (swaying) before Desmopressin for about 9 hours, after given Desmo it raises up to 444-473, the serum osmolarity is about 297 before (+/- 4) Desmo and about 286 after.

This is very clear stats.

But of course there is a reason they want a second test, beside earning more money:

My natriurm keeps very stable at 141, but was 139 when the test started, per definition it should have been lower in the end, not higher, same for the copeptin, which was 3,66 in the beginning and at 5,63 in the end. Both indicating a renalis variant.

I personally think this is bullshit, because the 3,66 is pathological as is the 5,63. Both are way to low.
The natrium is very stable and always in a normal range, for renalis is would have been far off.

So for me this case is very clear. The problem is that nobody really seems to know this stuff, i was the second patient doing this test and getting out with "positive" result. The clinic is sure i have got DI, but they are not sure about the type.

I do hope i can get the second test before June, so everything is clear when going to the endocrinologist.