40 Years of Pituitary Deficiency

Hello, my name is Sue, I will be 47 years old on 16th June this year and on 17th June 1968 I was operated on to remove a tumour on my Pituitary gland which was removed with it. So that is 40 years ago now. I had Craniopharyngioma and have hypopituitarism. Pituitary surgery back in 1968 wasn’t carried out through the nose as it is today, but via a craniotomy.

My parents were concerned as to why I was so short and after considerable enquiries, a tumour on my pituitary gland was discovered and determined to be the problem to my lack of growth. The doctors told my parents that if they didn’t operate I would be blind in a few months and probably dead within a year. The specialist said that the only hope for me was surgery but as they had never removed a tumour in a child so young (I was nearly 7 years old) there was only a 50/50 chance of survival and even if I did survive the surgery they did not know how to keep me alive post-operatively! The prognosis was a life expectancy of 5-6 years and loss of sight in 6 months! I did survive the operation and somehow the doctors managed to keep me alive and see me through many hiccoughs e.g. with medication which my body reacted badly to causing me to have a grand mal fit, helping me to grow to a fairly normal size and to develop from a little girl into a young lady. I have done very well and I believe I have had 35 years of borrowed time. I feel very strongly that part of my staying alive is because God has been looking after me and I am very grateful to Him for His love and support over the years.

I had a regrowth of the tumour in 1972 when I was 11 years old, which couldn’t be dealt with surgically, so I had Radiotherapy to sort that out and the prescription of glasses to correct the loss of sight, which was what alerted the regrowth problem, helped with that. I also had another brain tumour in 2006 which the neurosurgeon thought might have been caused by the radiotherapy I had in 1972. Fortunately that was a meningioma type of tumour and it was benign. Thanks to a very good surgeon and very good endocrine care during and after the operation I recovered from that fairly quickly.

I am also a New Zealander and I think that as New Zealand is a fairly small and isolated country that didn’t help my situation. There were very few other people in NZ who had my medical problem so everything was a challenge for the medical profession to conquer and for me to come through. I want to say also that I have been fortunate to have some very highly commendable doctors looking after me over the years for which I am very grateful.

I became used to living my life with constant trips to the hospital for checkups, measurements as to how I was growing, taking lots of tablets every day and going to the hospital at first for injections for my Growth hormone and injections for my Diabetes Insipidus. Later I went to my G.P. for these injections for which I was rewarded a jelly bean for each injection and one day the needle broke so I got 3 jelly beans! Then my Mum, who was a registered nurse, was allowed to give me my injections at home. The injections for diabetes insipidus were not very effective and consequently I drank an awful lot so that if I jumped up and down you could hear me sloshing around inside. I also needed to use the loo a lot and Mum wouldn’t go shopping anywhere where she didn’t know where a toilet was. Later they produced nasal spray for diabetes insipidus which I had for years, both of the spray sort and the measure-in-a-tube-how-much-and-blow-it-in-your-nose sort, and eventually DDAVP tablets which I am still on and find much more accurate and effective.

Today my medication is well balanced and kept an eye on by my Endocrinologist regularly. I take Hydrocortisone, Thyroxine, DDAVP tablets, growth hormone injections and Ovranette.

My life has been and will always be a challenge. Any time I am unwell, looking after me is more complicated. There have been times when doctors and nursing staff have got things wrong in their care for me and made keeping me alive more difficult. . Of course if I am unwell and am unable to keep my pills down I need to have hydrocortisone by injection. Once when in a local hospital I had been prescribed to have Hydrocortisone intravenously, this was not necessary, as I was not vomiting at the time and could have taken it orally. My cannula came out and the nurse could not get it back in again and despite my harping on at her for some Hydrocortisone she would not listen to me and said “What is your problem?” So I cried myself to sleep and it was 20 hours until they put a canula in me and gave me more needed hydrocortisone. By then I couldn’t move and couldn’t speak and if I had been left much longer I would have died. I now carry with me an emergency letter from my endocrinologist saying that if I can’t take Hydrocortisone orally then I should have it intramuscularly at intervals of no more than 8 hours.

It was also very difficult as a teenager in that the doctors kept me on growth hormone to try and maximise my growth before they started me on Oestrogen hormones to develop me and before my bones set. This meant I didn’t start developing until I was 16 years old, which put me way behind my peers and made life very difficult socially at that time.

Despite my parents being told by my school teachers that my doing school exams was a waste of time, I did them anyway with a lot of encouragement from my parents and passed them OK. I also went to University for a year, but didn’t complete my course as my boyfriend from England came over for my 21st birthday party and proposed to me and we got married 8 months later and then we came to live in England. I did do a course in London though and got a diploma in Phonetics and Remedial Speech. So despite fears that my brain might be malfunctioned or disabled, I think I am quite capable educationally.

I think it would be helpful sometimes to have an adrenal gland that functions without the support of hydrocortisone tablets. There are times when I have done something scary and it has really been very traumatic without the boost of adrenalin that the normal body would produce in such circumstances. However I have been for a ride in a hot air balloon and a ride in a helicopter, a ride on a runaway train at Chessington Park, and a sail on a catamaran with my brother all of which I put into the class of “an experience” And I coped.

I am greatly blessed too to have my husband Mark, who loves me very much and is very understanding and helpful in looking after me when I am unwell, and the rest of the time too. I also have lots of friends and family who have been very supportive, although a lot of people don’t know very much about the complexity of my medical situation. I don’t work as such but I do voluntary work at our local hospital as part of the chaplaincy team talking to patients and I find that very rewarding considering what I have been through myself and being able to relate often to patients situations. I try and just get on with life as best as I can and as normally as I can. Every day I thank God that I am alive and after 35 years of borrowed time and being able to be pretty normal that is something to be thankful about.