Joy's DI Story #NoNeedToDI

I was diagnosed with panhypopituitarism on Christmas Eve 1997. The following week I was told to go to our local hospital for a water deprivation test. It seemed a pointless exercise as by then it was obvious to everyone, including me, that I was drinking excessive amounts of water and passing equal volumes of urine. But it was deemed necessary and at the end of a very unpleasant 6 hours I was told I had Diabetes Insipidus.
In fact I had been unaware how much I was drinking! Before my diagnosis, my dear mother once said, “Joy, if you didn’t drink so much water you wouldn’t need to go to the toilet so often!” I didn’t know the reason but did realise I had an indescribable thirst and needed to drink lots of very cold frizzy drinks.
After diagnosis and prescribed medication life was a lot easier. I was never told about sodium levels, it is only recently that I realised the possible problems after reading patients’ stories in the Pituitary Life. All I was told was that I must never go above my dosage of desmopressin, even if it seemed to be insufficient and to drink to my thirst. Also, I should try to have one day a week without Desmopressin, it is something I have done regularly and I do think it helps, it is exhausting but I do feel better for it. I suppose it is a bit like a detox!
I have 3 secret weapons. First, my Accessible toilet key (formerly known as RADAR key), it has proven an absolute saviour on many occasions! A large bottle of ice cold fizzy water in the fridge and a stash of ice lollies in my freezer. Whatever the weather if my medication runs out and I cannot quench my thirst an ice lolly often does the job!
As for the name Diabetes Insipidus, it should be changed ASAP! It is confusing for everyone: new patients, their families, as well as qualified doctors and nurses! Whenever I have been on a non-pituitary ward and said: ”I have Diabetes …… “. The nurse has gone at top speed only to return with the Insulin box! I then have to say I am not diabetic and explain to a confused nurse that I have Diabetes Insipidus which has no relation to Diabetes Mellitus. It can be waring but I use it as a way to raise awareness.
I now overcome that problem by saying I have DI, in fact I use that every time I refer to the condition. If they don’t know what that is, I explain, in detail, again to raise awareness.
Thanks to the Pituitary Foundation there has been a huge increase in Awareness for DI. They have campaigned long and hard to change the name. Sadly, there have been a couple of tragedies due lack of knowledge and understanding. A name change is well overdue and will help avoid further misfortunes and confusions.
The sooner the name change the better.