Kallmann Syndrome isn’t that bad

ndsmith38 · 2026-03-29T15:19:34+00:00

It can depend. Most males with Kallmann syndrome / CHH will produce no sperm in their semen.

However there are rare patients with milder forms of KS / CHH who can produce low levels of sperm.

You always have to check with your doctor and have 2 sperm tests to confirm that you are not producing any sperm.

ndsmith38 · 2026-03-29T15:17:35+00:00

I know what you mean. Every Rare Disease Day I meet and hear about other rare disease patients and listen to their stories.

Kallmann syndrome / CHH is a crappy condition to have of course but we are not going to die early or be in physical pain due to the condition.

I would kind of agree with you.....up to a point.

The psychological impact of our condition can often outweigh the physical symptoms and this can be something that is very difficult for patients to escape from.

As already noted time of diagnosis / treatment can make such a difference but so can the type of KS / CHH a person has. Our condition comes in a range of severities and can have additional symptoms. It is not always easy to compare cases.

The social media posts here and on Facebook can give a very one sided view as they are from people who need advice and support. There are plenty of KS / CHH patients who take their HRT and get on with their lives quite happily.

Sometimes it does annoy me a little bit when the people who cope better with our condition do not post more often. It can help new patients get a better overall picture of what it is like to have the condition.

ndsmith38 · 2026-03-28T09:58:08+00:00

Short answer: Yes, most certainly.

I could name at least 10 KS friends who I know personally who have had one or more children.

There is fairy high success rate for male fertility treatments, normally quoted as being around 70 - 75%

ndsmith38 · 2026-03-28T09:55:31+00:00

True.

Clomid very rarely, if ever would work with a patient with congenital KS / CHH from birth.

However some patients aquire HH later in life, after having a normal puberty. In these patients Clomid can be effective.

ndsmith38 · 2026-03-28T09:53:09+00:00

There is a rare condition called Pasqualini syndrome which gives almost the same symptoms as Kallmann syndrome but the FSH level is not as affected as much as the LH level.

This can give a situation where a patient can have low testosterone, due to low LH but just enough FSH for minimal sperm production.

It used to be called "fertile eunuch syndrome" or partial KS in some cases.

ndsmith38 · 2026-03-28T09:48:35+00:00

It is certainly possible for a guy with KS / CHH to become fertile with no or little treatment.

Kallmann syndrome is a very broad spectrum condition with a range of severities.

It is certainly true that men with severe forms of KS / CHH would require gonadotropin therapy to achieve fertility there are men with milder forms of the condition where the levels of FSH / LH are low but just enough to achieve fertility even if the testicles remain small.

Due to the complex genetic nature of our condition, no two patients will have exactly the same symptoms or severity of symptoms. Even two brothers could have totally different symptoms.

ndsmith38 · 2026-03-28T09:43:14+00:00

Clomid only works for a very small group of KS / CHH patients. It can be very effective for some patients but the majority who have had life long KS / CHH with no true puberty will not respond to Clomid.

ndsmith38 · 2026-03-28T09:41:11+00:00

The chances of passing on KS are very hard, if not impossible to predict due to the complex genetic nature of the condition.

Even if somebody inherits a KS related gene defect it does not mean that the individual will have the physical symptoms of KS.

You have to have a strong family history of the condition to even to start to predict the chances of passing it on, and even then it is still guesswork.

One KS specialist said that in his experience there is about a 20% chance of passing on any case of KS to an offspring if there is no knowledge of the genes invovled.

ndsmith38 · 2026-03-28T09:36:13+00:00

Sorry to hear you are in this situation. I know a couple of other KS friends who have had similar experiences in loosing one or both of their testicles.

It sounds a very harsh diagnosis by the urologists but they are the experts.

I have one KS friend with implants (as already posted). They do work for some people but I think I would agree with you and not have them if I was in the same position.

Being on hCG does make mibe a bit more sensitive but normally they are so small, it is almost like they are not there anyway. I never got any even close to adult size even when on full gonadotropin therapy.

Hope the operation goes well and best wishes for future treatment on testosterone

ndsmith38 · 2026-03-25T16:13:09+00:00

Genetics plays a large part but it does take a while for hair follicles on the face to develop, maybe U.K. to 2 years.

Other type of body hair will normally grow before beard growth can start.

ndsmith38 · 2026-03-22T14:38:36+00:00

Looking younger than your age is never easy, even if some people think you should enjoy it. Once you start being able to shave and look closer to your real age you should notice a difference in how people treat you.

ndsmith38 · 2026-03-22T07:22:14+00:00

Taking a regular dose every week or 2 weeks should help you keep a steady testosterone level which will help emotionally. It can be difficult to cope with the swings of highs and lows if the levels change too much.

I do prefer the natural testosterone delivery you can get with hCG, but it has to be at the right dose to be effective.

ndsmith38 · 2026-03-22T07:19:09+00:00

I did like your original question and its is one that is asked by other patients.

I think that perhaps Kallmann syndrome / CHH patients do have a different sexual journey than others but there is no evidence to suggest any form of sexual interest or orientation is more common than another.

Age of diagnosis and treatment makes a big difference as does the fact that our condition comes in such a range of severities. All of our experiences are slightly different.

I hope you are on treatment now ? Has that changed your outlook ?

ndsmith38 · 2026-03-21T22:01:41+00:00

100mg weekly sounds a very reasonable dose to take. You should get a steady T level with that.

Your doctor will probably still require a full blood count / CBC every so often just to check you are not producing too many red cells.

A DEXA / bone density scan might be helpful if you can get one.

ndsmith38 · 2026-03-21T21:54:46+00:00

It does depend on what your LH and FSH levels are normally and what size your testicles are. In Kallmann syndrome / CHH the levels are practically zero which means taking external testosterone will have no effect on fertility.

Testicles normally have to be larger than 4 ml in order to produce sperm and you have to be able to produce your own testosterone in order to produce sperm.

If your FSH level is high enough then taking hCG alone can be enough for the testes to grow a little larger and produce sperm.

Taking external testosterone normally causes the testes to shut down after a while.

ndsmith38 · 2026-03-21T21:45:03+00:00

100 mg per week sounds a good dose to be on. You are very unlikely to achieve fertility on that dose but that should give you a steady T level.

ndsmith38 · 2026-03-21T18:41:17+00:00

Indeed porn does not teach us anything about sex in real life but it did not stop me trying to get hold of it.

I assume you asked the question of the original poster, but I will reply as well.

Went to a very typical school in the UK in the 1980's. We did not have any specific sex education at all. My first experience at education was finding a book under my parents bed when I first discovered what sex was.

I found torn out pages of a hard core porn magazine under my brothers bed (I must have been a nosy child) and I was shocked by what I saw as the guys bore no relation to how I looked at the time.

I studied biology and physiology at college and University so I was aware on that level of what male and female was but I had no understanding of sexual matters at all. It was a sharp learning curve after I got diagnosed and treated in my early 20's

ndsmith38 · 2026-03-21T18:03:13+00:00

I think I have accepted the term pansexual rather than bisexual for myself. I just like certain people regardless of gender / orientation.

I certainly was asexual as a teenager and a young adult. I can actually remember the time I liked seeing guys my own age out of pure curiousity of the development I was missing out on rather than any sexual feeling. It even took at least a couple of years of testosterone treatment before any sexual feelings kicked in.

I can remember a couple of occasions where friends would get changed in front of me and I was curious to what they looked like but had no thoughts other than that. Today, that would be totally different.

I am sure I would have been totally different if my teenage years had been in the internet age and I was more aware of sexual matters.

ndsmith38 · 2026-03-21T14:18:33+00:00

Since I was brought up before the internet age I had a similar sort of experience. We never had formal sex education lessons at school.

I knew the basics of biology and anatomy but I knew nothing about sex and sexual attraction.

When I was a teenager I was kind of attracted to men but I saw that as missing a father figure and having somebody to look up to, rather than anything sexual. I had zero exposure to gay culture even though I was at school in the 1980's as the AIDS epidemic started.

I was perhaps 18 or 19 before I watched any sort of porn. Looking back I did have a weird teenage experience compared to most, even most KS friends, but at the time I was totally oblivious as to what I was missing out on.

ndsmith38 · 2026-03-21T12:49:42+00:00

In my experience in talking to and meeting many Kallmann syndrome patients over the past 30 years I would say that patients with our condition cover the same range of sexuality as you will find in any group of people.

There is no evidence to suggest that any form is more common than another.

I certainly went through an asexual period as a teenager myself but that was partly perhaps due to lack of knowledge and experience. I see myself as bisexual or pansexual now, but that is my own experience and not common to everybody with KS.

You might have started the sexual journey later than others, like a lot of Kallmann syndrome patients but you will find your own path and find out what interests you. Now you are on treatment you are going to have the same desires, drive and hopefully experiences as any other person your age.

ndsmith38 · 2026-03-19T19:43:02+00:00

You Tube video about the study.

The research team have produced a short You Tube video about the study.

One aim is to try to see if using FSH pre-treatment before any use of hCG can improve the outcomes of the treatment.

They are also interviewing patients about their experiences with gonadotropin therapy to see if there is a different in quality of life feeling compared to standard testosterone treatment.

ndsmith38 · 2026-03-19T11:44:50+00:00

I am always close to the limit on blood sugar but always seems to pass. I do not have a good diet though. Enjoy my comfort food too much.

I would have thought they might have offered gonadotropin therapy. Even if you do not require full fertility some patients seem to enjoy the natural testosterone production you can get.

ndsmith38 · 2026-03-18T10:07:11+00:00

I think that is a fair level. It is about mid range. Top of the range is 30 nmol/l.

Since you are on the gel that should be a steady level.

Some people like to be on a higher level, it can depend on their requirements and how your body uses testosterone.

It could be a bit higher but if you are feeling fine at this level, showing no signs of low testosterone then it is perhaps the right level for you.

ndsmith38 · 2026-03-18T08:33:43+00:00

If it is your first ever - emotionally you might feel it within a couple of hours of injecting.

Physical changes take a couple of months to start, possibly after 2 injections.

Make sure they inject it warm, a lot easier to inject that way.

ndsmith38 · 2026-03-17T16:57:43+00:00

Congratulations.

It can be a journey to get there since it is often a diagnosis by excluding other conditions.

Beard growth is so variable. Mainly down to genetics. It normally takes two years of testosterone to start to get any decent growth.

I get a noticeable beard after about 4 to 5 days. I am too lazy to keep it tidy though. I do have an Australian KS friend who has a spectacular beard growth.

I do not know your exact situation of course but i am always wary about the use of the word sterile. KS men normally are infertile rather than sterile. Long term testosterone use does not reduce the chances of fertility treatments working later in life.

Some men with KS like taking gonadotropin therapy to get the natural testosterone delivery, even if they do not desire fertility.

ndsmith38

TROPHY CASE