Patient's story, by her husband - Diabetes insipidus

Patient’s Story as told by her husband David

I first met Jan at a Masonic “Ladies Night” in Liverpool,in 1964. She was there with her friends and their parents and I was part of the folk group that would provide the evening’s entertainment. We chatted and danced and agreed to meet for a date the following evening.

Our friendship developed over the next couple of years but at the same time we also dated other people. In 1967 Jan and her friend went to Spain for their summer holiday while I went to the USA with some friends for mine. We now subsequently believe that while Jan was in Spain she caught a virus that attacked her pituitary gland and destroyed a large part of it.

We resumed our friendship in the autumn of 1967 but there was a definite change in Jan’s behaviour pattern. Whereas before when we went to the pub, she would a gin and tonic, now all she wanted was a pint of water, and then another and another. Obviously, all this liquid meant more visits to the loo. Jan also began to lose weight and become very tired.

After many visits to the doctor and a variety of hospital tests, she was diagnosed with diabetes insipidus - virtually unheard of at that time. There was only one method of controlling the loss of fluid, and that was by an injection of pituitrine, usually into the thigh muscle after each passing of urine. Jan was so brave to inject herself three or four times each day, and often during the night, but the price of ulcerated legs was too much.

When faced with this dilemma her doctor said that a new drug was now available which was like a snuff that was taken nasally and would signal the end of the hated injections. 

We married in 1968 and now the snuff bottle came with us everywhere. In late 1968 Jan became pregnant with our first child, but alas it was not to be, and the baby was stillborn in September 1969. You must try for another our doctor advised and so it was in July 1970, Lena was born. By this time, Jan’s medication had changed from the snuff to the sniff. Now instead of a powder, Jan had a small bottle of a drug called DDAVP, a tiny amount of which had to be measured into a plastic tube and then one end went up the nostril, the other in the mouth and the liquid was blown up into the nasal passages. And this was the way in which she controlled her DI. In 1973 we moved to Stevenage when I became deputy head of a boarding special school. In 1974 our second daughter Carron was born and then in 1978 we had Sally. There were problems with the drug; the main one was over dosing. Whenever Jan had a cold which affected her nose, then she would find that her drug was less effective and so she would take more to compensate. This would sometimes result in epileptic-type fits and inability to speak properly. I was very pleased when about five years ago the diabetes consultant recommended that Jan should try Desmotabs.

At first Jan was reluctant to give up the sniff since it had been her trusted friend for so long, but I was adamant that she must place her trust in the tablets. I argued for all the advantages, and now she is pleased that she persevered. She has a number of other health issues for which she takes medication, but she is responsible for her Desmotabs. She takes one 0.1 mg tablet every six hours.

We have been lucky in our married life. Our daughters all married husbands who already had children and now have children of their own. We are both now retired, and find a lot of our spare time is taken up with the grandchildren, the garden and holidays. If there is anybody reading this who is struggling with the problems associated with DI then we would be very willing to listen and maybe offer advice. I would also strongly endorse all the help provided by the Pituitary Foundation to whom I say a heartfelt, “Thank you very much”.

Jan Johnston, a patient with DI whose story appeared in Pituitary Life magazine February 2012, very sadly passed away on the 30th October 2012. Jan is survived by her husband David, their three daughters and grandchildren. The family kindly organised a collection in her memory at Jan’s Thanksgiving service, to the Foundation of £500.00.