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Treatment methods for males with Kallmann syndrome / CHH

December 14, 2013

There are a number of different treatment methods available for men with Kallmann syndrome or CHH. Not all may be available in every country and some may not be appropriate for everybody.

The two basic options are:

Testosterone replacement

or

Gonadotropin therapy.

Testosterone replacement:

Testosterone replacement can come in a variety of forms and treatment intervals. One popular option is the Nebido injection, sometimes known as Reandron. This is a long lasting testosterone injection which is given as a deep muscular injection and can give normal testosterone levels from anywhere between three and six months. At present Nebido is not available in the USA.

Monthly and fortnightly injections of shorter acting testosterone are also available.

Daily gel preparations, such as Androgel, Testogel or Testim are available from a pump dispenser or single sachet. Daily use patches can also be used. One advantage of gel preparations is that the dose can be easily adjusted to suit the individual requirements but some people do get skin irritation when using them.

Tablet forms and gum patches of testosterone are available but rarely give the levels that men with KS or CHH require.

Implants of pellets lasting up to six months used to be available but they are not widely used anymore.

As with any form of hormone replacement, the levels of testosterone in the blood stream should be measured at regular intervals to ensure the correct dose is obtained.

Gonadotropin therapy.

Gonadotropin therapy is an alternative to hormone replacement. With these treatments the testes are stimulated into producing their own testosterone and sperm by the use of hormones called gonadotropins. If there has been no structural damage to the testes they can normally be made to produce testosterone and eventually sperm.

The time taken to produce testosterone is normally a matter of weeks whereas it can take up to two years of treatment in order for the testes to produce sperm. Normally the sperm producing medications are expensive and not always easily obtainable.

Pregnyl is a popular trade name for hCG. This medication can be used to make the testes produce their own testosterone. The injections are normally taken twice a week, just under the skin. The testes do not normally increase in size and in most cases (but not all) only testosterone is produced but no sperm. However it is possible to get a low level of sperm production while using hCG alone. It is important to ask your doctor about the chances of sperm production if using hCG alone.

To achieve sperm production FSH type medications are required, either in the form of pure FSH such as Follistim or in the form of hMG such as Menopur or Repronex. These medications are normally the most expensive to obtain and it can take up to two years of treatment in order to produce enough sperm for fertilisation. Injections are normally taken just under the skin, sometimes through a pen injector twice a week. The testes will increase in size over time as the sperm producing cells multiply. Normally these injections have to be taken in conjunction with the hCG injections.

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6 Comments
  1. Hi
    Do you produce sperm with the testosterone replacement terapy, like Nebido ?

    • The majority of men with KS / CHH will not produce any sperm while on any form of testosterone replacement therapy such as Nebido.

      In order to produce sperm a different form of treatment called gonadotropin therapy is required. This involves self administered injections of the hormones hCG and FSH which would stimulate the testes to produce testosterone first and then eventually sperm.

      It can take up to years of gonadotropin injections in order to produce enough sperm to enable fertility.

  2. level of lH was 0,7 IU/L after long time of injection sustanon 250. I have passed test on 14 day after last injection sustanon 250. Is it possibly having this data on lh. I suffer from Kallmann syndrome

    • Sustanon is unlikely to have any effect on your LH levels.

      If you have low LH and FSH levels it is possible you have KS but your doctor will have to do more tests in order to confirm this. If you have no sense of smell this could also be an indication of having KS.

  3. Evan permalink

    What about pulsatile GnRH therapy as a gonadotropin class of therapy? Is that “out of the question” here in the US unless you are in Dr. Crowley’s study at MGH in Boston?

    • There is an ongoing trial in the US at the moment for GnRH for women. I will post a link to the site and the participating centres around the US. There is a chance they might be able to accept male patients as well. No harm in asking. I have posted this information in the Facebook groups so you might have seen it already but I will post it here as well.

      =========================================================
      Ferring Pharmaceuticals is currently recruiting for a Phase III investigational drug study for women with Primary amenorrhea with hypogonadotropic hypogonadism (Hypo Hypo) who are looking to get pregnant.

      The study might be a good fit for you if you meet the following criteria:
      • You are a woman 18-40 years old
      • You have a clinical history or were recently diagnosed with primary amenorrhea with hypogonadotropic hypogonadism
      • You have the desire to become pregnant
      If you decide to take part in the research study, you would:
      • Read and acknowledge a consent form
      • Have tests and procedures performed and answer screening questions to determine eligibility to participate
      • Take study drug as directed by your study doctor
      • Complete a patient diary as instructed by your study doctor
      • Have tests and procedures performed during the study and at study close-out
      Women who take part in this survey will receive pre-determined compensation for cost of time and travel to and from the appointment, parking and other transportation costs for all visits except for the screening visit. Also, if patients do not ovulate during the study, they will be offered one cycle of gonadotropin medications (Menopur®, Bravelle® and/or Novarel®) at no cost. No study-related follow-up will be provided. The patients will be responsible for any obstetrical/follow-up care.
      If you are interested in learning more about the study and to see if you qualify as a candidate, please go to the following website to find a clinical research site close to you.

      http://www.dspstudyinfo.com

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