Hypogonadotropic hypogonadism

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Any experience of this please... sources of decent advice:info. Young adult son been diagnosed. Sad and scared for him, and he won't talk to us about it or let us come into appointments etc....
What might treatment look like, short term, long term etc.... any support gratefully received. TIA

My husband has this. Diagnosed at 18 and he is on life long HRT and sees an endocrinologist. The hardest part for him was the psychological aspect as a teen who hadn't gone through puberty. But it doesn't impact him at all really, he leads a normal life. There are fertility options too- IVF and ICSI. However, he responded well to weekly injections and we conceived naturally- we have a healthy 2 year old. So there is a lot of hope :) Go on Facebook and search for Kallmann's Syndromers- there are a couple of groups who can help you. As it's so rare you may struggle to find info online but the Facebook group has all the latest updates on advances as well as support for concerned parents like yourself. All the best x

Thank you so much Misty for the info and positive story... lovely to read. Follow up appointment with endocrinologist but not til Feb.... seems a long time without any clear idea of what the plan might be.

That must have come as a shock. I highly recommend the Facebook group, they are very supportive and will give you far more info than I can. There are some endocrinologists who specialise in the condition and others that are a bit crap and clueless. The people on the fb group can help point you in the right direction. Feb is far too long for your son to be without hormones. I would push for sooner x

My partner also has this condition following a brain injury early last year.. he takes levothyroxine, testosterone, and hydrocortisone daily (he has just stopped testosterone as we have started fertility treatment so he now has 2 weekly HCG injections). @Mistymeow is this the same as your husband was given? How long was it before you were pregnant if you don’t mind me asking? Any info on the fertility side would be welcomed!

my partner has struggled a little bit with getting the testosterone level as it should be, he finds the gel that gets prescribed doesn’t get the levels up enough, but of course everyone is different. He feels loads better already on the HCG injections so hopefully this means they are working!

once they get the HRT levels right this condition shouldn’t effect daily life for your son, other than remembering to take medication but it will become second nature. Really hope he’s doing okay! It’s a bit of a minefield when you first hear of it all ♥️

Hi @Elizamable yes that’s correct about the injections. The first time he took it it was around a year to become pregnant the first time. He started this time in November and I’m currently 11 weeks pregnant, so didn’t take as long this time. If he already had sperm before treatment he has a very good prognosis of it working. If not there is ICSI. I know someone with Kallmann’s who had 0 sperm and did ICSI with surgical sperm retrieval and they have twins, so there is a lot of hope! Good luck.

@Mistymeow thank you ☺️ we’ve been told that our aim will be ICSI so that’s positive!
good luck with the rest of your pregnancy ♥️

Sorry - I know I am reviving a very old thread but we have just been diagnosed with a similar issue as DH also had a pituitary injury in his early twenties. Can I ask if you started with zero sperm and managed to get sperm on the injections? Can you remember what dosages your DH was taking? I am so worried about this and given I am 36 we do not have unlimited amounts of time. It would be great to hear some reassurance that this treatment can work!

@Eks86 Hi, most likely if your husband has zero sperm your best bet is the sperm retrieval procedure then ICSI. My husband already had sperm so the injections alone worked well for him. The couple we know who had the sperm retrieval ended up with twins and she was 40 so that’s very promising. It’s really important to get a good endocrinologist, we found some of the consultants didn’t have a clue about KS and gave incorrect information. I know you said your husband has a different pituitary condition but I would try someone like Dr Quinton (Newcastle). We didn’t see him in the end because we are in Surrey but we emailed and he put us in touch with a great endocrinologist at UCL (all nhs). Drop him an email explaining your situation and I’m sure he will be helpful.

Hi @Eks86 this sounds very similar to my partners condition, he started with 0 sperm.. he’s been on 2000 U.I. Gonasi HCG injections for 13 weeks now, he hasn’t had his sperm count done yet (that’s due March 13th) but his bloods so far have been good and his testosterone is back up to higher than it’s been since his accident.
I’d definitely get onto the fertility clinic and ask to start the injections, it took us 18 months from referral to actually get the meds. Let me know if you want any other info! ♥️

@Mistymeow Thank you so much for your response. I have actually done quite a bit of research and managed to get more info about this and DH is now on HCG and FSH injections so its all moved pretty quickly (helps having a few doctors in the family). It's actually more hopeful that I thought that the injections will work even in the absence of any sperm to begin with and there are quite a few success stories (mainly involving males with Kallmans Sydrome) who have managed to recover sperm and conceive naturally which is what we are hoping for. We are hopeful but realistic, and know it is going to be a long process. So glad to hear stories like yours though.

@Elizamable Yes our situations sound very similar. DH has now started on 5000 iu of HCG and 300 iu x3 of FSH a week. Will do a blood test in a few weeks and another SA in a few months to check the progress. I am hoping and praying these work as there do appear to be quite a few success stories with this and I've been advised that with appropriate dosages and a lot of patience, we can get there eventually. Would be great to keep each other updated as we seem to be at a very similar stage in this journey!

Good luck to you both! @Eks86 I think my husband is on a similar dose. The second time he went on treatment he started at 2million and it only took 6 months for me to fall pregnant so it just shows how effective the treatment can be. Even if it doesn’t work there is ICSI which I hear great things about from those with KS.

@Eks86 oh that’s amazing he has started already, and great they’ve put him straight on the fsh too.. we’ve been told if it doesn’t improve after 4 months on the hcg they will add fsh in too… but would rather he was on it already!
yes would definitely be good to keep each other updated ☺️ good luck! 🤞🏼

Just came on to say good luck to you with the treatment... we're a little way off this with my son. Just starting Nebido injections to get him through puberty.

Just frustrating things take so long to get going, referral to local endo, then pushing for a referral to someone who actually knows what they're talking about etc to start the correct treatment.

Good luck!

Hi @Elizamable I just wondered how your partner is getting on with the treatment?