What does it mean for you?

You need to see a doctor who knows about conditions affecting the hypothalamus and pituitary at least once/twice a year for a check up or more if you are younger or have particular problems.

Doctors need to check that the hormone levels are right for you at your particular age and that you feel well, sometimes you may need a different hormone or a change in the type or dose of hormone treatment. For some of you this might be for life as often conditions affecting the hypothalamus and pituitary gland don’t go away.

Children

Being on the short side is something that can happen with hypothalamus and pituitary gland problems therefore one focus is on growing taller. If you are on the short side this is usually because your body doesn’t make enough growth hormone. More often than not you will be started on growth hormone injections. These will help you grow.

Sometimes the pituitary gland doesn’t make enough of the hormones called gonadotrophins (Luteinizing hormone and follicle stimulating hormone) that make the ovaries work.   This means that you may need help to go through puberty. To go through puberty you will need to take oestrogen medication, the hormone that the ovaries make. This happens when you are almost a teenager.

The pituitary gland also produces other hormones. If these are also low you may need to take MORE hormones. It is worth taking them as not having enough of these hormone, for example, can make you feel tired or put on weight or very very thirsty which might make life as a busy young person tricky.

You are also busy getting on with life at home and school, with family and friends.  It's important to try and not let anything get in the way of this.  Don't forget to talk to your family or the doctors if you are having problems with school work or with friends as sometimes a visit or a letter to the school can help people understand more about growing up with a condition affecting your hypothalamus and pituitary gland.

 

Younger teenagers - still growing!

By now most of you will be on growth hormone injections, unless you have only just been diagnosed or are making enough of your own growth hormone.  You should still be growing and the growth hormone injections are helping with this so keep up the good work.

Sometimes the pituitary gland doesn’t make enough of the hormones called gonadotrophins (Luteinizing hormone and follicle stimulating hormone) that make the ovaries work.   This means that you may need help to go through puberty. It is around now that puberty should be starting. To go through puberty you will need to take oestrogen medication, the hormone that the ovaries make,  Puberty is when you GRADUALLY over quite a few years change from being a child into an adult. 

The pituitary gland also produces other hormones. If these are also low you may need to take MORE hormones. It is worth taking them as not having enough of these hormone, for example, can make you feel tired or put on weight or very very thirsty which might make life as a busy teenager tricky.

You are also busy getting on with life at home and school or college, with family and friends.  It's important to try and not let anything get in the way of this.  Don't forget to talk to your family or the doctors if you are having problems with school work or with friends as sometimes a visit or a letter to the school can help people understand more about growing up with a condition affecting your hypothalamus and pituitary gland. Did you know there is an ID card called Validate UK that you can carry with you as a proof of your age?

 

Older teenagers - growing is slowing!

By now most of you will be almost through puberty. This means that you could be very close to stopping growing (this is when you are only growing 2 cms a year).  Hopefully you are pleased with everything as you have put in a lot of effort.  Now your doctors and nurses need to see if you are still not making enough growth hormone as you may need to stay on growth hormone injections to help keep your muscles and bones strong and your fat levels down. In some people staying on growth hormone injections can even boost energy levels.

The pituitary gland also produces other hormones. If these are also low you may be on MORE hormones. It is worth taking them as not having enough of these hormone, for example, can make you feel tired or put on weight or very very thirsty which might make life as a busy teenager tricky.

You are also busy getting on with life.  You are probably planning what you want to do after school or college, getting work experience etc.  You are also probably spending more time with your friends and thinking about closer relationships.  It's important to try and not let anything get in the way of this.  Don't forget to talk to your family or the doctors if you have any concerns that may help if they are talked through with somebody who understands more about growing up with conditions affecting the hypothalamus and pituitary gland.  Did you know there is a ID card called Validate UK that you can carry with you as a proof of your age?

Young adults

You have now made it through puberty and stopped growing.  You with the help of your doctor will have decided whether you needed to stay on growth hormone injections. If you are still not making enough growth hormone, growth hormone injections help keep your muscles and bones strong and your fat levels down. In some people staying on growth hormone injections can even boost energy levels.

The pituitary gland also produces other hormones. If these are also low you may be on other hormones. It is worth it as not having enough of these hormone, for example, can make you feel tired or really quite unwell or very very thirsty which might make life as a busy person tricky.

You are also busy getting on with life.  You are probably either looking for or have started your first job or still studying.  You are also probably thinking about closer relationships.  It's important to try and not let anything get in the way of this.  Don't forget to talk to your family or the doctors if you are have any concerns that may help if they are talked through with somebody who understands more about growing up with conditions that affect the hypothalamus and pituitary gland.

Thinking about having children of your own can be important at this time of life although not for everybody.  If you needed oestrogen medication to get through puberty and are still on them you may need to talk through options available.  There are always options!  If you went through puberty on your own and are not on oestrogen medication you may need to take care not to get pregnant if you don’t want to.

Adults

The key thing for adults with conditions affecting the hypothalamus and pituitary gland is to keep up with general health screening once or twice a year to keep you as well as possible into old age! This focuses on making sure all your hormone levels are right and the medication is suiting you and lasting as long as it should. Simple changes can help boost energy levels. If you feel that your energy levels are flagging and your growth hormone levels are low you could consider starting growth hormone injections again as in adults they can improve quality of life.

Support and Further Information

Child Growth Foundation
Tel: 020 8995 0257  
website www.childgrowthfoundation.org

Pituitary Foundation
Tel: (Helpline): 0845 450 0375 
(Admin): 0845 450 0376
Web: www.pituitary.org.uk

You & Your Hormones
You & Your Homones is a public information website funded by the Society for Endocrinology. You & Your Hormones is an online resource for members of the public with accurate and reliable information on hormones and hormone-related conditions. The website has a news section linking to recent hormone-related stories in the news; topical issues section including relevant guidelines and policy statements; education page with links to teaching resources and a public events listing.
Tel: 01454 642200 
Web: www.yourhormones.info