Hormone replacement
If testosterone levels are low, hormone replacement therapy (HRT) is typically prescribed.
Prescriptions
Testosterone (and oestrogen) are controlled drugs and all forms are available only by prescription.
KS/XXY is not on the list of conditions which qualify for free prescriptions – although the KSA is working with the Prescription Coalition to get the list extended.
It is likely that the charging system for HRT will be changed sometime this year with one prescription covering one year’s supply of HRT. Watch our website for more information.
Meanwhile, if you are on a low income you may be able to get help to pay these NHS charges:
- NHS prescriptions
- NHS dental treatment sight tests, glasses and contact lenses
- travel to receive NHS treatment
- NHS wigs and fabric supports
You can check what help you could get and what to do next.
It usually takes 3 minutes to check this here.
Nebido is commonly prescribed and must be administered by a nurse or doctor.
Advantages:
needs to be administered only 3 to 5 times per year
no special precautions required
Disadvantages:
injection can be painful
some patients dislike the initial high level of testosterone
some patients find that they run out of steam before the next injection is due
some patients forget to book their appointment
Many medical professionals have little or no experience of administering a Nebido injection so make sure they have read the instructions - and make sure you know how it should be done so that you can check!
Nebido must not be cold when it is administered. Hold the ampule in your hand for a few minutes.
A small needle is used to extract the liquid from the ampule but a large needle must be used to inject it
You should be comfortable and relaxed, lying face down
The injection should be given in the buttock
The injection should not take less than 2 minutes
Many like the gel preparations because they give a very even delivery of testosterone. They are short-acting and can be discontinued immediately if the patient is uncomfortable with the effects.
There are several products on the market. If you don't like one, ask to try an alternative one.
Advantages:
daily dosage gives an even delivery without highs and lows.
easy to discontinue if patient unhappy with effect
Disadvantages:
have to be applied every day
should be applied after a shower
take a few minutes to dry (time varies between products)
accidental transference to others must be avoided
Read the instructions for your gel carefully because they vary from product to product. Some should be rubbed in, others should just be spread evenly on your skin. Some should be applied to the shoulders, while others may stipulate different areas. If you are not sure of the correct method, ask your medical professional to explain.
As with most drugs, there are pros and cons.
TRT can have very positive effects, although the extent of these will vary from person to person. The most common are:
- increased assertiveness
- improved self esteem
- clarification of thought processes
- growth of facial and body hair
- possible reduction in danger of osteoporosis
- possible improvement in muscle bulk
- increased stamina
- some adults dislike the masculinising effect testosterone will have on their personality and body
- untreated KS adults have a reduced risk of prostate cancer compared to XY men. TRT will remove this advantage. The prostate should be checked before treatment is started and should be monitored
- Testosterone is known to increase the red blood cell count. This can be a problem if testosterone levels are not monitored
- increased aggression particularly soon after injections when levels are high
- mood swings when levels are high or low
- increased probability of male pattern baldness
- acne
It is important that testosterone and haematocrit levels are monitored carefully until a stable dose is established. After that annual checks should continue.
