June 2013 - Diabetes Insipidus

Its name alone strikes fear into me, Diabetes "Insipidus" (DI). Essentially what this disorder does ( http://en.wikipedia.org/wiki/Diabetes_insipidus) is make you want to drink a lot and pee a lot, usually at night time. It is a side effect of having the Pituitary surgery, as the gland is bashed about during surgery it can set it off. I first had DI in hospital and they gave me an injection which stopped it dead, and I hoped I'd seen the last of it, but it was not to be.

I gradually started losing more and more sleep during late June as I got up every hour for a pee, and had to take a 1 litre jug of squash up to bed with me to drink during the night. If you don't drink in what you pee out, then you get horribly dehydrated (my body would pee whether I drank or not). So my recovery was in jeopardy due to chronic lack of sleep, you really cannot imagine what it is like to just keep waking up hour after hour going through the same of pee-drink cycle. I spoke to the Endocrinologist team hoping they would help me, but they said it was probably just a 'transient' episode of DI and it would pass, but it didn't it just kept on, and I was getting desperate.

In the end during July, I got an appointment with the Endocrine team again and persuaded them to prescribe me Desmopressin tablets, which stops DI in its tracks, but it is a scary drug because it stops the kidneys producing urine and it means that you have to be careful how much you drink whilst you are under the influence of the drug. I have been on the drug a few weeks now, and it really is miraculous the effect it has it just works. I have had some blood tests which show my body is just about coping with the effect of the drug, and I will have to have regular blood tests to make sure it stays that way.

What should happen is once the Pituitary gland calms down from the operation and the rest of my hormones are balanced, everything should go back to normal. But I couldn't have hourly wake up calls from now until whenever things go back to normal. So I am happy I'm on these tablets, but also a bit nervous that the Pituitary does indeed go back to normal. You cannot underestimate how confusing all this has become....when things were normal you just drank and pee'd, essentially if you drink too much your body gets rid of what it doesn't want...you don't even think about it. Now I have become a bit obsessed by how much I drink and pee, and it is something I really don't want to be thinking about, and with the weather up at 30 degrees right now of course you are bound to drink more, and this just compounds my worries and confusion. The advice is straight forward enough, if you are thirsty follow your body's urges and drink. So that is what I am doing and so far so good. Trust me you don't want anything to do with DI, it really ruins your day, and it is another thing I want rid of in the near future.