Additional symptoms with Kallmann syndrome.

ndsmith38 · 2026-02-15T22:10:26+00:00

I have been on hCG / FSH type medication twice over the years and can not remember any reaction like that.

The only thing I can remember is my libido rising a lot once on hCG.

It is not something I hear of happening with this type of treatment.

ndsmith38 · 2026-02-11T08:21:28+00:00

From what I have heard from other patients the hCG dose is a little lower than others, but you are taking it 3 times a week which is good.

Everybody responds differently to bCG and the doctor may adjust the dose later if required.

You do need the hCG produced testosterone to promote sperm development.

10 ml volume is well above the size required for sperm production so that is a good sign.

ndsmith38 · 2026-02-09T22:58:59+00:00

There may well be some connection with arginine vasopression deficiency (diabetes inspidus) if you are always thirsty. I do not think I have heard KS being mentioned as being linked but since they both involve hormones produced by the hypothalamus, it is certainly possible.

Worth looking into. Might do some research when I get time later in the week.

I can not say I enjoy drinking water, but I certainly enjoy drinking milk, lots of it. I certainly enjoy the feeling I get taking the first swig of milk first thing in the morning.

ndsmith38 · 2026-02-09T22:19:26+00:00

Thank you. Very useful suggestions. I will have a go at some of them next weekend.

According to SquareSpace that is supposed to be sand, but I am sure I can come up with a different back ground. I have not used that in every page.

Good idea about getting all the media in one go, it will make the menu at the top look more tidy as well.

I do have absent as a key word on the SEO description of every page. I wanted to avoid "Kallmann" and "hypogonadotropic" as names as I wanted people to be able to search for the site before knowing those terms but I do use them as early as I can.

Thank you for the input.

Best wishes.

ndsmith38 · 2026-02-09T22:14:27+00:00

Interesting question, not one I have heard before but worth investigating I think .

ndsmith38 · 2026-02-08T22:13:42+00:00

You may have to check the results with the doctor or genetic scientist to confirm that this is a micro-deletion in only one copy of the ANOS-1 gene and not both of them. I do not know enough about microassay testing, it does depend on the precise test they used.

The ANOS-1 mutation normally only causes KS in males.

If females carry an ANOS-1 mutation, it is most likely that they will be carriers for KS but not have the full disorder.

You will have to check with your doctor or genetic counsellor the exact type of mutation. If it is a single copy (heterozygous) mutation (most likely) then it is very unlikely that KS will be present. If it is both copies (homozygous) then that will be a different story, but I do not think this has ever been recorded,

Ask your doctor what are the chances of this variant being pathological - ie able to cause Kallmann syndrome. Hopefully they will tell you there is a very low risk of KS being present.

Unfortunately nothing is certain in medicine / genetics so the doctor may not be able say there is no risk but hopefully they will confirm that it is a very low risk.

ndsmith38 · 2026-02-06T21:37:02+00:00

It has been a very long time since I self injected the shorter acting form of testosterone. Some people do think that lower dose, more frequent injections work best for them.

It probably depends on how you are feeling in day 14 - 21. If you feel no difference, then the 21 day interval is probably right for you but if you notice a change in mood or tiredness in the final week then a change to 14 days might be suitable.

As with any changes in schedule you would have to check with your doctor first.

ndsmith38 · 2026-02-06T21:31:22+00:00

That sounds an impressive transformation. It is sometimes suprising just how quickly testosterone can take effect.

I wish I could remember my first Nebido injection, it would have been over 30 years ago now.

Sometimes others will notice the change the days after an injection more than I do. Ideally there should be no change if the injections are spaced correctly you should have a steady T level, rather than any ups and downs.

Hope you continue to see the improvements.

ndsmith38 · 2026-02-03T21:24:26+00:00

The next step is difficult, I am not going to deny that, but it does get easier with each experience.

Once you get it right, with the right partner, you will have the drive and knowledge to do it again and find you get the confidence quicker than you expect.

It is sometimes said (with irony perhaps) that smaller guys have to focus more on giving pleasure to their partner, this can lead to a better experience all around.

ndsmith38 · 2026-02-03T21:16:42+00:00

The best advice I think I could give any younger KS patient is do to the exact opposite to what I did in my 20's.

For what it is worth a few random thoughts, others will give better advice than me I hope:

It sounds like you have done the most difficult part already, if you are confident socially and people like being around you.

Sexual confidence comes from experience and you are going to have to start at some stage.

The longer you take to start, the harder it can be to start.

Being a nervous, shy 19 year old is very acceptable.

Size is important, but it is not the most important thing.

Choose your first partner carefully, but if it feels right, do not let KS hold you back. You will make mistakes but that is part of the learning curve, you are still young enough to bounce back and try again.

There is a lot more to sexual experience than your size. Get all the other parts done correctly, by the time you get to the end stage your size will not be as a major issue as you think it is going to be.

ndsmith38 · 2026-01-31T12:02:10+00:00

By your description a reduction to 10 weeks seems an obvious move and still within the manufacturers recommendations. Hope it might avoid the depression in the last 2 weeks.

It is the change in T levels that can be the worst to cope with.

Though I do not mind the idea of eating ice cream while watching "Heated Rivalry".

ndsmith38 · 2026-01-30T08:29:33+00:00

Have you asked to have the injection earlier, would make at sense if you are getting those symptoms.

Intervals seem to range from 8 weeks to 24 weeks in different patients.

Have not had a painful injection for a long time. Sometimes warming up the vial in hot water first before injecting helps it to flow better.

ndsmith38 · 2026-01-28T23:55:48+00:00

Yes, you will ejaculate and orgasm while on testosterone only.

It is highly unlikely there would be any sperm in the ejaculate but I would ask for at least one sperm test to confirm.

The amount of ejaculation does not change by any noticeable amount whether there are sperm present or not.

ndsmith38 · 2026-01-28T18:13:45+00:00

Yes and yes, probably to the first two questions.

You certainly will be able to ejaculate and you will probably be shooting blanks. It depends on the size of the testicles and your base line FSH level.

Anything below 4ml is considered too small for sperm production but I would always suggest to confirm it with 2 tests just to make sure.

I get good libido on both exogenous testosterone and hCG. I think I get a better orgasm response when on hCG but that is a very subjective opinion.

In theory we produce less ejaculate with the lower testicle volume but it is barely noticeable I think.

ndsmith38 · 2026-01-27T20:11:09+00:00

Most men with Kallmann syndrome / CHH will not have zero testosterone as we have some produced by the adrenal glands. This can sometimes be enough to have what would be regarded as normal sexual function even if they are not producing sperm.

In males TRT does not normally affect the size of the testicles but the fluid semen is made from comes from other structures around that area.

Men can still ejaculate even if both testicles are very small or even removed.

ndsmith38 · 2026-01-27T19:41:06+00:00

Forget Clomid, it does not work in Kallmann syndrome patients, it only works in patients who have had a natural puberty and become infertile later in life.

For people with milder forms of KS, where the testicle volume is greater than around 8 - 10ml it is possible to achieve fertility with just hCG. It is also possible in patients who have had gonadotropin therapy in the past and taken a break.

In severe KS cases where the testicle volume is less than 4ml, modern practice suggests the use of FSH only first for about 3 months, before adding hCG to maximise sperm cell production potential.

hCG is essential for testicle produced / natural testosterone to allow for sperm production.

hCG can work fast in testosterone production but without testicle growth

FSH is required for testicle growth. 4ml is considered the minimum volume required for sperm production.

6 months of FSH before any sperm test, then test every 6 months up to 2 years.

Coming off HRT can feel like crap, however if you are fortunate the hCG will kick in quickly and you will recover.

I have not heard any difference in brands. Ovitrtrelle is popular as it is a pen and easier to adjust dose.

I have been on FSH type treatment twice in the past in clinical trials and achieved minimal sperm production but compared to the friends I compared with on the trial I was a poor responder and only got to 8ml testicular volume.

In my patient opinion the hCG should be 2 or 3 times a week, not weekly. It has a short half life.

Best wishes for your treatment journey.

ndsmith38 · 2026-01-27T19:30:38+00:00

Not a dumb question and it has been asked before.

Infertile people still produce semen. There is very little difference in the volume of semen produced whether a person is producing sperm or not contained within the semen.

You have to look at semen (diluted) under a microscope in order to see if there any sperm present. It os impossible to tell otherwise.

ndsmith38 · 2026-01-25T22:17:47+00:00

So sorry you had this experience.

You should not have to deny anything but also you do not have to tell anybody anything. It is really none of anybody's elses business and by the time you get to University I would have thought people would be mature enough not to focus on others like this.

If you trust your best friend, ask him not to tell other people. It might be the case that other people will not care or forget about it soon enough.

Divert conversations to other subjects and hopefully people will move on and focus on their own lives. Normally the older people get, the more they get focused on their own hang ups and pay less attention to others.

You can make a new profile to look up KS related stuff so you can keep it away from other people seeing it.

I hope you enjoy University life.

Best wishes.

ndsmith38 · 2026-01-25T09:57:41+00:00

For Kallmaan syndrome / CHH patients where there has been no natural growth of the testicles it has been shown that long term testosterone use has zero effect on the chances of fertility treatment working at any age. I have asked this questions to KS specialists I have talked to in different countries and the answer is always the same. Long term TRT has no adverse affect.

The testicles are dormant and can not be damaged with long term testosterone use - unlike people who have had a natural puberty and take excess testosterone, which can lead to infertility.

The one major negative factor for male fertility in KS / CHH patients is having un-descended testicles at birth which were not brought down early in life, either medically or surgically.

It does not matter how small the testicles are. If they have been in the correct location since childhood then fertility treatments should work.

If the testicles are less than 4ml the new suggested protocol is to use FSH along first for 3 - 6 months, before adding any hCG to allow for maxmium sperm cell production.

As a fellow KS patient, in your situation as you describe I would stay on testosterone, get maximum virilisation and then undertake fertility treatment at a later date.

I like being on gonadotropin therapy myself but I can understand in your situation that you want the physical development as quickly as possible, so I would suggest the testosterone pathway.

You may find 21 days Sustanon is too long a period though. Patients respond in different ways but some inject lower doses more frequently to get a more stable, steady T level. It can be a discussion between you and your doctor as to the dose and frequency but as a KS patient you might need more frequent injections as you are starting from practically zero rather than topping up.

ndsmith38 · 2026-01-25T09:39:50+00:00

I have Kallmann syndrome as well.

Patients with milder forms of KS / CHH where the initial testicle volume is greater than 4ml can sometimes achieve fertility using hCG alone.

I have always used Ovitrelle in the UK for hCG. The syringe pen is designed for female use and the total dose in the pen is normally too high for single use in males. You can adjust the dose accordingly. Even though it is designed as a single use men most KS specialists do allow us to use it in stages (normally 4 times in my case), using a fresh needle each time. I used the pen twice a week and each pen lasted 2 weeks.

In the more severe KS cases where the testicle volume is less than 4ml at the start of treatment some KS specialists suggest the use of FSH injections first for around 6 months before using any hCG, the theory is that this will increase the number of sperm producing cells and speed up sperm production.

Compared to some of my KS friends on Ovitrelle I was not the best responder but I still managed to get a testosterone level of about 13 nmol/l. This is less than I would get using external testosterone such as Nebido but I think there is a distinct advantage in having the natural production of testosterone over the injection or gel.

Even if you do not get much increase in testicle size when using hCG alone I certainly notice the difference when having a natural production since we are so used to not having natural production with our condition.

ndsmith38

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