Pituitary News, Issue 14 - Winter 2000.

Obtaining funding for Growth hormone replacement therapy can be difficult due to high cost of the treatment. Read one member's account of his successful fight to obtain funding.

by V.P.

In the middle of 1995 it was discovered that I had a Pituitary tumour and in October that year I was admitted for a hypophysectomy. After the operation, I was placed in the care of Professor Lightman, and his wonderful team, at the Bristol Royal Infirmary.

After surgery I felt as if I had been given a new lease of life. On my second visit to the clinic it was decided for me to have a course of Radiotherapy which lasted five weeks. This was to kill off the tumour that could not be removed by surgery.

As the radiotherapy started working, I started to feel very, very tired with hardly any energy and not wanting to do anything, and at times very depressed and breaking down in tears over nothing. Oh what a life!

When I mentioned to Professor Lightman how I felt, I told him my get up and go had got up and gone, and he decided to refer me to Dr Tripti Mahajan who discovered that I had a Growth Hormone Deficiency. I was put on a research programme which consisted of four months of injections, four months off them and then another four months of injections, plus blood tests and dexa scans. The research started in April 1998 and finished a year later when all the information had to be analysed, so I had to wait patiently for the results.

Whilst on the injections you weren't supposed to know which injection was a placebo and which was the Growth Hormone replacement, but once you started you could tell which was which.

After a few months, it was decided to put me on the GH replacement and that's when the problems started. Professor Lightman wanted me to go on it, my GP was in full agreement but the Primary Care Group (they are the ones who hold the purse strings) were against it because of the cost.

I was advised to contact my MP but I didn't have to as my GP did it for me. We saw the MP at his local surgery, and with his help and Professor Lightman's, the Primary Care Group have agreed to let me have GH (although they were somewhat reluctant to do so).

To cut the story short, if you have to go on medication and the Health Authority says NO, then FIGHT - it's worth it.