Living with growth hormone deficiency (GHD)

Although many people may be living with GHD, we understand that no two people are on the same journey.

What is GHD?

Growth hormone deficiency or ‘GHD’ is a condition that causes the body to not produce enough growth hormone, which can lead to lower levels of growth. GHD is often diagnosed in children after it becomes obvious that they are shorter than expected for their age; however sometimes this is not diagnosed until they become adolescents or even adults. GHD can also spontaneously develop in adults known as ‘adult-onset’ GHD.

Although many people may be living with GHD, we understand that no two people are on the same journey. Some adults living with GHD may have been diagnosed as children and some adults may have only recently been diagnosed as adults.

Adult-onset GHD tends to occur when the pituitary gland in the brain has been damaged in some way and does not make enough growth hormone. The cause of most childhood onset GHD is not known (idiopathic) or can be genetic or develop before birth. What many people do not realise is the physical impact adult GHD can have – it is not simply about height. Symptoms of adult GHD include low energy levels, decreased stamina and difficulty concentrating.

View from people living with adult GHD:

Person one: ‘What is like to live with GHD as an adult? The best description I’ve heard is that it’s like going uphill with the brakes on. I felt the tiredness most in my legs. It was already there when I woke up and increased throughout the day so that by late afternoon I would want to lie down and go to sleep. I had no energy left to pursue my interests outside work and I was simply not enjoying my life.’

Person two: It’s like too much effort to even tell somebody what’s going on with you and explain it. “You’re obviously tall. You haven’t suffered as a result of this.” … It’s not physical to them. If it’s not physical to them, it’s not valid to them.’

Adults living with GHD may experience issues with body and self-image, which may lead to increased anxiety, depression and social isolation.

Person three: ‘It was difficult. And I would complain to my wife, not a lot of other people. She could tell that I was not my same self…’

Person four: ‘Anxiety, like right now; there are times when I just sit down, and I can just feel like sometimes my whole insides are just shaking and I have to take these deep breaths.’

In children it is crucial that GHD is diagnosed as soon as possible to ensure the right treatment is given to help them grow. Adults living with GHD will also be given treatment to help replace the missing growth hormone. To find out more about GHD and specific treatments, speak to your doctor.

Person five: ‘Before I started treatment, I felt like I had a life of a 90-year-old and the energy levels of a 90-year-old, and now I feel like I’m probably about 25, but I’m not. But, yes, I certainly have more energy and I just feel good.’

If you or your child is affected by GHD, you may have many questions and that’s understandable. Remember you’re not alone and that support is available.

Get prepared for talking to your doctor

If you are concerned about your child’s growth, don’t hesitate to speak with an HCP. They will be able to complete some measurements and investigate further if needed, potentially referring you on to a specialist. Here we can help you plan for both conversations.