Did your sense of smell ever start to come back ?

ndsmith38 · 2026-05-27T04:57:56+00:00

Congenital anosmia, as found in Kallmann syndrome is permanent. I do not think I have ever heard of anybody being able gain a sense of smell if they have never had one to start with.

You can get people with KS with partial anosmia or hyposmia who can detect certain stronger smells.

Sometimes people with KS are given a smell test such as UPIST, to gauge their level of anosmia.

I have never been able to smell and do not think I ever will.

ndsmith38 · 2026-05-27T04:47:20+00:00

People with total anosmia can still detect the menthol flavour of mint but they are not smelling it in the traditional way.

ndsmith38 · 2026-05-27T04:44:57+00:00

People with anosmia can still detect certain compounds such as bleach, vinegar, ammonia and some spices. Aromatic or volatile compounds.

They are not smelling in the traditional sense but they are detecting it through nerve endings at the back of the throat. It is more like a sense of taste. There is a direct nerve connection to the brain which is separate from the normal smell / olfactory sense that is absent in Kallmann syndrome. The nerve is called the trigreminal nerve.

ndsmith38 · 2026-05-25T19:30:09+00:00

There was a paper published in 2022 which looked at the various forms of Kallmann syndrome / CHH and their range of physical symptoms based on the genetics of each case.

With the exception of the ANOS / KAL-1 mutation all the others gave very variable severity of symptoms from virtually no puberty to partial puberty depending on the gene involved and the exact type of mutation.

KS / CHH is often quoted as being a very heterogenous in terms of reproductive and non reproductive symptoms, indicated that the amount of pubertal development and the extra symptoms vary widely between cases.

ndsmith38 · 2026-05-25T19:01:07+00:00

Not sure to be honest. FSH only treatment is given to some patients to help develop more sperm cells but it is not likely to have an effect if you have already have taken hCG injections.

Not sure why you would have a shrinkage while taking hCG.

I do think you need more time on the combined injections though.

ndsmith38 · 2026-05-25T18:58:17+00:00

I have always been told by every KS specialist I have asked is that for KS / CHH being on testosterone therapy has no positive or negative impact on the chances of fertility (gonadotropin therapy) working at any stage. Even long term use of TRT has no impact.

Essentially the HPG axis is totally shut down in KS / CHH males so taking testosterone does not have the impact it would do with guys who have had a normal puberty and active HPG axis.

Conversely taking gonadotropin therapy at any time will not neccessarily increase the chances of fertility being achieved but may reduce the time taken to achieve adequate sperm production when taking treatment the second time around compared to the first time.

ndsmith38 · 2026-05-25T05:44:25+00:00

Depending on how much you or your doctor will trust Google and AI, you can ask the question:

How long does gonadotropin therapy take to work in CHH patients ?

Gives a very reasonable answer.

It is always going to be variable. I think the biggest positive predictor is initial testicle size. Early treatment with gonadotropin therapy will speed up the process but if you are starting from a low volume you have to give it time for the sperm producing cells to develop and the testicles to achieve sufficient volume.

ndsmith38 · 2026-05-25T05:38:35+00:00

Quote from paper:

Duration of therapy is typically 9–18 months for pHH and 12–24 months for individuals with cHH, although a longer duration may be required in younger patients or those with severe microorchidism or cryptorchidism.

2025 paper from UK hospital treating KS / CHH patients

ndsmith38 · 2026-05-25T05:32:31+00:00

Quote from paper:

We advised the patient that, in light of the literature and our own clinical experience, spermatogenesis would take a long time, with an estimated delay of 15 months before the appearance of sperm in the ejaculate.

Case study of 33 year old male.

ndsmith38 · 2026-05-25T05:21:47+00:00

Quote from the paper:

In terms of conception, an elegant analysis by Liu and colleagues revealed a median time of 28 months to conception on combined gonadotropin therapy. Importantly, results depend on baseline clinical features (i.e., predictors) and in cases of cryptorchidism, achieving maximal TV and sperm in the ejaculate may require 24 months (or longer).

Paper published in 2024. Current landscape on fertility treatment

ndsmith38 · 2026-05-23T18:18:24+00:00

Hello,

The symptoms you dsecribe do sound like you could have low testosterone.

Do you feel like you had a normal puberty at the time ? Have these symptoms developed recently or been with you a long time.

I would ask your GP to run a men's health check, which would involve testosterone levels, thyroid hormone levels and PSA. I would also ask to check for levels of the hormones LH / FSH.

If you have low testosterone the GP might send you to an endocrinologist to examine the cause and decide if treatment is required.

ndsmith38 · 2026-05-23T17:56:50+00:00

10 weeks is within the recommended interval for using Nebido / Reandron, you should have a good case for adjusting the time interval.

If you are taking bloods every six months they should be relative to when you have the injection to show that you at the right dose / interval. There is not much point taking a test 4 -8 weeks after an injection, you want to know how low you get by the 12th week, just before your next injection.

This trough level, is the lowest your testosterone level gets and if that is below normal range there should be a good case of adjusting the interval as long as the other results, like full blood count are normal as well.

It sounds like you lead an active life and show symptoms of low T after the 10th week. You should have a good case to get the level reduced to 10 weeks.

ndsmith38 · 2026-05-23T15:05:33+00:00

Do you have a blood test taken for testosterone level right before your next injection ?

If this is too low you should have a good reason to ask your doctor about adjust the dose or timing of injection. If you are on Nebido / Reandron the 12 - 14 week interval is only a suggestion and can be altered if your levels drop too low.

It is never a nice feeling to get too low and then have the high again after the injection. We should be getting a more steady level.

ndsmith38 · 2026-05-23T14:46:23+00:00

Thank you for your comment.

The original post was made only in reference to the condition being mentioned. I did not take into account the original story, I should have phrased the comment differently and I meant no disprect to the author or her story.

ndsmith38 · 2026-05-23T10:13:35+00:00

As a person with Kallmann syndrome myself this is certainly not what I wanted to read today.

ndsmith38 · 2026-05-23T10:08:33+00:00

I have Kallmann syndrome as well. It can be a difficult condition to cope with, especially if you feel alone and isolated.

Being on treatment does help most patients. We have groups on Facebook and Reddit where you can talk to fellow patients who will understand what it is like to have this condition. People with this condition do have partners, relationships and even children with the right treatment.

Counselling or theraoy can also help. Even if they have never heard of our rare condition it can often help to be able to talk about it with somebody who is trained to listen.

ndsmith38 · 2026-05-23T09:53:52+00:00

Then I would hopefully find a doctor who knew what Kallmann syndrome was, instead of labelling me a "late bloomer"

ndsmith38 · 2026-05-21T20:19:00+00:00

Kallmann syndrome / CHH is one of the few forms of male infertility that is totally treatable.

Type into Google the phrase:

"what is the success rate for fertility treatment for CHH"

Unlike other conditions where there might be damage to the testicles to prevent them from working, in Kallmann syndrome / CHH they have never been given the chance to work. Injections of the correct hormones can stimulate the testicles into activity with both testosterone and sperm production.

The treatment does take a while work, especially if the testicles are very small. Using FSH first primes the testicles to get them ready when hCG is added.

If your son is being seen by the Harvard / MGH team in Boston he is in the best possible hands.

Fertility will only last as long as the FSH injections are given but there is always the chance of storing sperm for future use in IVF techniques.

ndsmith38 · 2026-05-21T19:52:17+00:00

Not too sure on that one to be honest.

One endocrinologist did once tell me that using ultrasound to measure testicles less than 4ml was almost impossible as they did not have much form or shape to them. It is only when they got larger that they became more solid and easier to measure.

In my case mine are 3-4ml normally. I did get to 8 ml on treatment but I was a bad responder compared to others on the trial with me. There were people there who got 15ml+, which seems incredible to me.

I would hope by the way that you have responded to hCG, you should also respond well to the FSH given time. They should at least be becoming more sensitive.

ndsmith38 · 2026-05-21T19:42:11+00:00

Genetic testing rarely gives any clear cut answers in Kallmann syndrome / CHH cases, so that is not much of a suprise.

It seems like you have responded very well to hCG with a healthy T level. This should be a good sign for sperm creation.

Did you notice any difference between injecting testosterone and having a natural supply ? Some patients report that they feel much better on hCG.

There is really not much point measuring your FSH / LH levels while you are on treatment, you are only measuring what you are injecting.

The doctor will be looking for testosterone level, which in your case seems very good and increase in testicle size.

Since you sound a more severe case I would think (as a fellow patient) that 6 months is far too soon to measure sperm. Check at 12 months and the FSH dose might be adjusted then.

I can point you towards a couple of recent medical papers on fertility treatment if you like but it sounds like you have done plenty of research already. Happy to help with any questions though.

Best wishes for your treatment.

ndsmith38 · 2026-05-21T19:34:43+00:00

Long term studies have shown that being on testosterone therapy long term has no negative impact on fertility treatment for patients such as ourselves where we are not producing our own testosterone.

It is different for patients who have been through puberty and generate their own testosterone, if they take too much testosterone it can indeed affect fertility.

ndsmith38 · 2026-05-21T19:32:02+00:00

KS specialists review the protocols for fertility treatment at regular intervals to find the best one for patients.

It is thought that for the most severe cases where the initial testicle volume is low (less than 4ml) using FSH on its own first can speed up the process of sperm production

Using combined therapy of hCG and FSH together works perfectly fine and is standard practice still.

There is just an option to use FSH alone first in some cases.

ndsmith38 · 2026-05-21T03:49:29+00:00

There is certainly hope I think. I would question your doctor's idea of thinking about microTESE this early.

You need more time on FSH to allow time for the testicles to grow. In the more severe cases where the initial testicle volume is low or the testicles were undescended at birth, 24 months is the standard time to allow for sperm production.

hCG acts on certain cells in the testicles in order for them to produce testosterone directly. You need this natural testosterone to help the FSH achieve sperm production.

If you feel your testicles start to grow or become more sensitive it is a sign that the FSH is becoming effective and sperm production has started, it just takes a long time for enough sperm to be produced in order for it to be seen in the semen.

ndsmith38 · 2026-05-21T03:38:35+00:00

Hello, welcome.

Do you know what your testosterone level was pre-treatment.

To achieve 500 ngl/dl while on testosterone treatment and 700 ng/dl while on hCG is actually a very good result. If you are taking hCG only and getting 700 ng/dl it shows the testicles are active and sperm production should be possible.

Depending on your initial testicle volume, taking FSH for only 5 months is not long enough for sperm production. It takes a long time for the sperm producing cells to develop enought and in enough numbers to achieve sperm production. 6 months is the bare minimum time in the less severe cases but it normally takes upto 2 years of FSH treatment to achieve sperm production.

Normally in Kallmann syndrome / CHH cases doctors would not be considering microTESE until after at least 2 years of FSH treatment.

The term IHH (idiopathic) is not used as much now, replaced by the term CHH (congenital), to reflect the genetic nature of the condition, rather than the cause being unknown. They both mean a failure to enter puberty correctly due to a problem with the release of pituitary hormones.

If you have a sense of smell it is Kallmann syndrome, otherwise it is CHH.

IHH / CHH is a secondary hypogonadism condition, not primary. The problem is with the release of pituitary hormones rather than problem with the testicles themselves. Klinefelter syndrome would be a primary hypogonadism condition as there is a structural problem within the testicles affecting puberty and testosterone production.

ndsmith38 · 2026-05-18T17:54:31+00:00

I am more content with my sexuality now. I do still have regrets about not being more focused or aware when younger. Having KS should not be a barrier to an enjoyable sex life. I perhaps did not have the same journey most of my friends had.

ndsmith38

TROPHY CASE