Nick's pituitary journey

My pituitary journey started in 1997, when I was first diagnosed with chronic fatigue and signed off work sick for two months. I was essentially ‘burnt out’ with acute stress from a very stressful job, managing a fostering and adoption service, five years of sleepless nights from our two pre-school children, being on an emergency duty social work rota, the death of both my parents and family difficulties winding up their estate. On the basis of one blood test, which showed very low levels of testosterone, my doctor started me on testosterone replacement by implants. I was back at work within two weeks, feeling much better.

However, work stresses continued and I only felt well on the implants for three of the five month cycle. It took a month for the implants to slowly build up the testosterone levels and after the fourthmonth, they dropped off leaving me feeling increasingly fatigued with poor concentration, sleep disturbance, mood swings and depression. After nine years of declining health, I felt really ill and I sought advice from a consultant endocrinologist. He advised me that the original diagnosis was “insecure” and should not have been made, on the basis of one blood test when suffering from an acute stress episode. But, he advised, having been on implants for nine years, my body’s own mechanism for producing testosterone had withered and I would be dependent on HRT for the rest of my life. He prescribed injections of Nebido every 10 weeks, instead of the implants, and these have proved to be a big improvement. I do not have to suffer invasive surgery and stitches that comes with implants, and my energy and general well-being is much more even throughout the cycle. I do decline in the last week of the cycle, but this is much more manageable than the huge swings experienced with implants.

Despite the improvements brought by Nebido, continuing work stresses brought about a continued decline in my health and I ended up having to retire on the grounds of ill-health at the age of 52, in 2008. I was very depressed, struggling to cope with managing my pituitary condition, feeling very isolated and very hurt by the complete lack of support or understanding of my condition by extended family and friends.

Thankfully, I joined The Pituitary Foundation, read a range of their information leaflets, the Pituitary Life magazine, used the endocrine nurse Helpline and began receiving copies of the Solent Support Group Newsletters. I realised that other pituitary patients experienced similar psychological effects and difficulties in managing their conditions, and this reduced the sense of isolation. I am now a Volunteer for The Foundation, supporting those who have my condition of hypogonadism.

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Since retiring, and without work stresses, my health has improved considerably and I retrained as a Volunteer Advisor at my local Citizens Advice where I now work one day a week as their Training Supervisor. I live an active and full life and have learnt to build in rest periods as a way of managing the fatigue and other symptoms of the pituitary condition. Retiring early has given me new opportunities, which I have embraced and enjoy.