I'm 18 (male) and I have not hit puberty. I'm 99% certain I have hypogonadotropic Hypogonadism. How do I get checked?

Here's some background about me. I was born a bit premature, my mom did a C-section for me (I'm not sure if that matters), and I had an undescended testicle from birth which was treated with a surgery when i was like 6 years old or something. I don't know what sort of surgery they did. This is embarassing, but I was born with a micropenis which I believe was treated when I was a toddler using hormonal therapy - basically they injected some stuff into my testis with a syringe. Fun stuff. My last treatment was when I was like 5 I think. I don't know what sort of condition I have now which leads to absent puberty, but I suspect it has to do something with my undescended testicles or lack of hormones. Also, my cock doesn't work =(

I found out that hypogonadotropic hypogonadism is basically consistent with all my symptoms.

>When GnRH deficiency occurs in the late fetal or early neonatal periods and is caused by a lack of the first intrinsic GnRH peak, which lasts until six months of age, the incidence of cryptorchidism and/or micro penis is high (5). Men presenting with HH that started in the pre-pubertal phase and was triggered by the intrinsic second GnRH peak exhibit eunuchoid body proportions, a delay in the development of secondary sexual characteristics, a high-pitched voice, pre-pubertal testicles, and delayed bone maturation

This literally describes me. The symptoms for Pre-pubertal hypogonadism (described in the table below that text) also describes me WAY TOO ACCURATELY. Here are the symptoms:

  • Eunuchoidal stature
  • Small testes (usually <6cm3)
  • Small penis (<5cm)
  • Lack of normal scrotal rugae and pigmentation
  • Small prostate
  • Scant facial, axillary and pubic hair
  • High pitched voice
  • Gynecomastia
  • Infertility
  • Lack of libido
  • Low bone mineral density
  • Low muscle mass, high percentage of body fat
  • Mild anemia

I have LITERALLY EVERY symptom mentioned in there! I could not believe it, but I checked off every symptom. Maybe except for low bone mienral density, because I can't exactly check that, but other than that - it describes me way too well. I think I hit the jackpot here. What do I get tested for? It says that this condition is very rare. Is this even possible to get checked for in my country? I live in a third world country (Indonesia) and the medical system here isn't that great. This makes me

... keep reading on reddit ➑

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πŸ‘€︎ u/ColdassConjecture
πŸ“…︎ Oct 07 2021
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Kallmann syndrome / hypogonadotropic hypogonadism is not the same as delayed puberty.

I was termed a "late bloomer" until I was 23 years old. I went through school and University not having started puberty. Every doctor I saw basically told me to "wait and see" and that I was just a late bloomer.

One doctor, when I was 19, did put me on the Sustanon injection but it was a monthly injection of only 100mg so it produced no effect at all, so I stopped taking it. At the time I just assumed it would all start by itself at somestage.

At no time did any doctor ask if I had a sense of smell. To be fair I can not actually remember if I told any doctor at the time. I was sent to see a general medicine consultant and a urologist. At no time was I sent to an endocrinologist.

It was not until I was 23 and working in my first post University job at a hospital that I had a chance meeting with an endocrinologist there. One of the first questions he asked was if I had a sense of smell and that in turn led to my diagnosis and treatment.

There has to be an age range for puberty to start and some people will be at the higher end of this range. Most people who are late starters or late bloomers will start natural puberty on their own but for the small percantage of males & females who do not start at all, we get left behind.

I now look near enough my right age and testosterone therapy helps, but I never had real puberty and I will require some form of hormone therapy all my life.

Missing out on both puberty and adolesence meant that I missed out on both the physical and emotional parts of growing up as a teenager and young adult. It is not easy to catch up and many of my fellow Kallmann syndrome / CHH friends struggle with physical and emotional relationships due to having the condition.

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πŸ‘€︎ u/ndsmith38
πŸ“…︎ Aug 08 2021
🚨︎ report
Kisspeptin-54 accurately identifies hypothalamic GnRH neuronal dysfunction in men with congenital hypogonadotropic hypogonadism pubmed.ncbi.nlm.nih.gov/3…
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πŸ‘€︎ u/ndsmith38
πŸ“…︎ Nov 29 2020
🚨︎ report
Genetic Evaluation of Patients With Delayed Puberty and Congenital Hypogonadotropic Hypogonadism: Is it Worthy of Consideration? frontiersin.org/articles/…
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πŸ‘€︎ u/ndsmith38
πŸ“…︎ Jul 07 2020
🚨︎ report
Kisspeptin-54 accurately identifies hypothalamic GnRH neuronal dysfunction in men with congenital hypogonadotropic hypogonadism pubmed.ncbi.nlm.nih.gov/3…
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πŸ‘€︎ u/ndsmith38
πŸ“…︎ Dec 05 2020
🚨︎ report
I have Hypogonadotropic Hypogonadism

The average adult male has a testosterone level of 240 to 950 ng/dl, until I was 17 my max was about 4 ng/dl (less than the average female range). Now, as a 20 year old, I'm about 10 away from escaping the average female range, ask me anything! (Just for clarification, I am an adult male)

My proof: https://truepic.com/mbsvanmp

https://drive.google.com/file/d/1hKaE8sVpVfBWKof5py2XgaJmeJeMiGZW/view?usp=sharing

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πŸ‘€︎ u/mocon52
πŸ“…︎ Dec 05 2018
🚨︎ report
On line patient meeting for Kallmann syndrome / hypogonadotropic hypogonadism patients.

We have an on line Zoom meeting arranged for the 23rd May at !2:00 noon EST (5pm UK time).

The meeting will be hosted by Dr Andrew Dwyer of Boston College, USA.

This meeting is aimed at teenage and young adolescent patients.

There will be future meetings held in June and July for female patients and "sex and intimacy".

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πŸ‘€︎ u/ndsmith38
πŸ“…︎ May 16 2020
🚨︎ report
I went through a medically induced puberty due to a 1 in 10,000 case genetic disorder (Hypogonadotropic hypogonadism aka Kallman Syndrome) AMA

One of the peculiar consequences of this is that I have almost no sense of smell, however my sense of taste is normal.

I was given Human chorionic gonadotrophin (HCG) and Testosterone through the ages of 16.5 to 18 and now ongoing TRT.

Edit: Thanks for your questions, its really late here so I'm going to bed but will answer anymore you have in the morning.

Edit: Morning (or night for most of you) answering more questions though not sure how to give proof, maybe I can dig up my referral letter between endo's.

Edit: Some FAQ stats: I'm 5ft 10 from being 5ft 6-7inches before treatment. My penis grew 2inches to almost 5inches and I can actually lift weights now.

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πŸ‘€︎ u/throwawaynowpls
πŸ“…︎ Oct 09 2012
🚨︎ report
On line Zoom meeting for women with Kallmann syndrome / hypogonadotropic hypogonadism

The next Zoom patient meeting will be held on Sunday 28th June starting at 12:00 EST / 5pm UK.

This will be a meeting for women only, hosted Dr Andrew Dwyer of Boston College, USA.

I appreciate the time is not very suitable for Aus / NZ but we have to work around Andrew's other work commitments. Hopefully we can organise an online Aus / NZ meeting at a more favourable time of day.

I will not take part in the meeting at all. It is strictly for women only. Leave a message here and I will send you a link to the meeting.

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πŸ‘€︎ u/ndsmith38
πŸ“…︎ Jun 06 2020
🚨︎ report
Idiopathic hypogonadotropic Hypogonadism

Hi everyone. I’m new to this group but came here because obviously I’m TTC.

A little background: I’m 31 and have never had a period. Yes, you read that right. I’ve been to many many specialist throughout my life but finally met one that gave me an accurate diagnosis: Idiopathic hypogonadotropic Hypogonadism.

Here is where I’m hoping this community can help. I’ve never met anyone with this diagnosis and I’m having one hell of a time finding a support group. This is my shot in the dark. Does anyone here have the same diagnosis or know somebody with it? I’m currently trying to get a period and trying to conceive but I feel so alone. My partner can only do so much.

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πŸ“…︎ Mar 01 2020
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Just been diagnosed with hypogonadotropic hypogonadism, and I'm a bit confused.

On a blood test a few months ago it was picked up that I had "very low" testosterone, and a prolactin level of 2500mU/L.

I was diagnosed with a "likely" pituitary adenoma (they can't get a clear view due to it slowly bleeding). Which had caused the hypogonadotropic hypogonadism according to my results letter.

However after googling I'm at a bit of a loss as to what Hypogonadotropic hypogonadism actually is. I mostly find very technical articles.

I'm a man aged 29, I'm by no means short (5ft 11inches), and relativity broad.

I have never had any chest hair, and barely any armpit hair. I do have pubic hair down stairs and quite a bit I assume.

I've always thought I was quite on the "small" size penis wise.

Does anyone have any experience with this? Or able to tell me what I've got, and what it means?

Thanks!

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πŸ‘€︎ u/specialneedz
πŸ“…︎ Aug 18 2017
🚨︎ report
Treatment options for Kallmann syndrome / hypogonadotropic hypogonadism

I was diagnosed with Kallmann syndrome when I was 23 and was put on Nebido (testosterone undecanoate) soon afterwards. I have found it has given me good, stable testosterone levels and the 10 week interval is convenient.

I have been on gonadotropin therapy twice in the past 20 years for fertility treatment, both as part of clinical trials. I achieved sperm production both times but I did not respond well as other men on the trial. I do like the fact gonadotropin therapy offers a more natural development than you get with testosterone therapy.

I have used hCG on its own in the form of Pregnyl and more recently Ovitrelle just for testosterone production. It seemed to work well. Even though I got lower testosterone levels than when on Nebido or even the gel, the fact it was a natural testosterone production seemed to suit me better.

The one treatment method I would like to try is the GnRH pump therapy but it is used so rarely outside clinical trials I have never had the chance. I would like to know what it would feel like to use.

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πŸ‘€︎ u/ndsmith38
πŸ“…︎ Feb 01 2020
🚨︎ report
Hypogonadotropic hypogonadism being treated with HCG.

I have felt like shit for 8 months and it appears the cause is low testosterone (167). I don't know if you'd say it's "caused by" or a symptom of hypogonadotropic hypogonadism, but that's what my endocrinologist says I have. I am 29.

I have 3 10,000 IU vials, 3 doses a week. If I continue my current workout regime (Stronglifts 5x5), assuming calorie intake is at a surplus still, might I see better gains with the help of HCG?

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πŸ‘€︎ u/kmao2004
πŸ“…︎ Mar 25 2015
🚨︎ report
Hyper/hypogonadotropic hypogonadism (Zanki)

This card is playing out two ways in my head:

- it is referring to acquired hyper/hypogonadotropic hypogonadism, in which case the uterus/breast answer is only referring to female patients... because acquired hypogonadism wouldn't cause the magical growth of a uterus in males

- it is referring to cngenital hyper/hypogonadotropic hypogonadism, in which case it applies to both males and females; presumably, congenital hypogonadism would cause a lack of MIF in the XY genotype, resulting in formation of a uterus in genetic males

Someone throw me a bone here

https://preview.redd.it/wcwcpmjwj8721.png?width=1932&format=png&auto=webp&s=1140e9ddcad53df77832b6d81822fcda7d97a0df

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πŸ‘€︎ u/RealMedicMD
πŸ“…︎ Dec 29 2018
🚨︎ report
I have been diagnosed with Hypogonadotropic hypogonadism at 19. I have some questions about lifelong TRT.

Yesterday my doctor put me on androderm, which I was happy about, but research from this sub and other resources (like mayo clinic reviews) shows that they don't always work. My doctor initially wanted to put me on pellets, but I wanted to avoid them for now. Are lifetime injections the only surefire treatment, and is TRT the only treatment for HH?

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πŸ‘€︎ u/LordAnon5703
πŸ“…︎ Sep 12 2015
🚨︎ report
How rare is Kallmann syndrome or congenital hypogonadotropic hypogonadism (CHH) ?

A fairly common question is what is the incidence of Kallmann syndrome and CHH.

The easy answer is that nobody really knows as these condition cover a range of symptoms and severity, are caused by over 25 known genetic variations and not widely known about in the medical community.

A recent review paper stated the range of incidence quoted in published papers varied from 1 in 8,000 to 1 in 29,000 for men and 1 in 40,000 to 1 in 300,000 for women.

ORPHA.net, which is the world wide genetic database for all rare disorders estimates that for both males and females the overall incidence is 3.75 per 100,000.

If my maths is correct this works out to be 1 in about 26,667 people. How many people with KS / CHH in each country: (rough estimate of course):

UK: 2,437 people USA: 12,150 people Aus: 900 people

Certainly counts as a rare condition by definition of both the American and European rare disease organisations (NORD and EURODIS).

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πŸ‘€︎ u/ndsmith38
πŸ“…︎ Jul 22 2017
🚨︎ report
Treatment for idiopathic secondary hypogonadotropic hypogonadism

Hey y'all.

I'm a nurse in the state of Texas so I know the gist of not being able to diagnose/provide medical advice over the internet, etc.

26 y/o male, 5'11", 206 lbs. Dx idiopathic secondary hypogonadotropic hypogonadism - from what I've been told there was possibly damage to my pituitary due to head trauma that unknowingly occurred to me at some point in my life. I've been told by my ophthalmologist that I actually have a bruise on the back of my right eye so while I don't know how it happened I've started to agree with the theory. No genetic testing has been done; Kallman's Syndrome has been r/o Last hormone labs - crap, I'll see if they'e around here somewhere... I know they were all within range.

I've been taking hCG 2,000 U 3x a week intermittently over the past two years because of cost and job loss. I have faith and I'm very confident that I'm getting a good course of treatment.

However hCG is proving to be overwhelmingly expensive - does anyone have knowledge of any other alternative that exists or has just been FDA cleared/'new'?

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πŸ‘€︎ u/JohnnyBGood10
πŸ“…︎ Apr 23 2018
🚨︎ report
Genetics of Kallmann syndrome / Congenital Hypogonadotropic Hypogonadism. kallmannsyndrome.wordpres…
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πŸ‘€︎ u/ndsmith38
πŸ“…︎ Sep 16 2017
🚨︎ report
[Request] Normosmic idiopathic hypogonadotropic hypogonadism: update on the genetic background and future challenges

Fathi AK, Luo X.
Normosmic idiopathic hypogonadotropic hypogonadism: update on the genetic background and future challenges.
J Pediatr Endocrinol Metab. 2013;26(5-6):405-15.

http://www.ncbi.nlm.nih.gov/pubmed/23640935

Thanks in advance!!

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πŸ‘€︎ u/Mishulo
πŸ“…︎ May 07 2013
🚨︎ report
Delayed or absent puberty. - Kallmann syndrome (congenital hypogonadotropic hypogonadism).

I have a rare hormonal condition called Kallmann syndrome, which prevents puberty from occurring normally. It can also be associated with a lack of sense of smell.

It not widely known about in the medical community so sometimes can be difficult to diagnose promptly. There are some AMA's from myself and a couple other fellow patients.

I was dismissed as a "late bloomer" until I was 23 before I was correctly diagnosed.

Puberty can start late but I wanted people to be aware of this condition where puberty never actually starts.

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πŸ‘€︎ u/ndsmith38
πŸ“…︎ Sep 11 2016
🚨︎ report
[Table] IAmA: I went through a medically induced puberty due to a 1 in 10,000 case genetic disorder (Hypogonadotropic hypogonadism aka Kallman Syndrome) AMA

Verified? (This bot cannot verify AMAs just yet)

Date: 2012-10-09

Link to submission (Has self-text)

Link to my post

Questions Answers
Feel free to bury this question, but you did say ask you anything. No worries :)
How's the fella downstairs? Anatomy-wise? size-wise? He works fine and gets excited very very easily. Diamond hard erections usually in the first few weeks of a dose.
Does having Kallman's affect the way you view your sexuality/sexual confidence? Size-wise, I could have ended up a lot worse. Like micropenis under 1inch worse. It's about 4.5inches hard on average, again, when I'm really hard at the start, it maybe reach 5inches. While this is a little smaller than average and I used to feel pretty bad about...I can last for ages and stay hard the entire time (with my hand at least haha), things I feel are just as if not more important than a big penis.
I was just curious because I feel like I went through a lot of transformation and transition through out puberty but figuring things out about my own body and sexuality was a big issue so I thought I'd ask. But, for a lot of years sexual confidence was very low, first kiss at 18, no sex yet as of 20 but I'm working on it. Saw a child psychologist during my first years of treatment which really helped given how differently I had my experience.
Diamond hard erections My dick is now diamonds.
Is it nice you cant smell bad shit? Yeah, actually.
What would have happened if they didn't induce it? Basically no sex characteristics, like hair growth, testes
... keep reading on reddit ➑

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πŸ‘€︎ u/tabledresser
πŸ“…︎ Oct 10 2012
🚨︎ report
Hypogonadotropic Hypogonadic 21y Male

Hi guys. So a little about me: I have what’s known as Kallman syndrome, which is described in the title along with some other varied symptoms. I’ve been through several doctors with varying doses, and finally β€œdecided” on a doctor (read: my parents, who pay my insurance, decided he was the best because he is a specialist and works closely in the field revolving around my disease).

At first I was quite pleased with the results I was getting for his regimen for TRT. I was on 200mg test-c weekly. But after 6 months and a few blood tests, he concluded my total testosterone was too high and to back it down (I can’t remember my exact values, but it was in the 1k range). He backed it down to 100mg weekly, which worked well at first but now I have some concerns.

The last time I was tested under the weekly protocol, my total test was 560 at my trough. Since that back down I have felt very weird and tired, but in a way that has me concerned for my cortisol and E2/E3/Estrogen.

My doctor does not want to order the bloodwork for E2 etc. because he says β€œthey are not conclusive in males and clinically hold no importance unless their is already an issue.” My question is: could I just be feeling weird because I got used to the 1k and now I’m half that? I’ve been feeling weird for years now so I didn’t think that was the case. My doc is essentially a specialist but if he thinking E2 is that useless isn’t that a bad sign? What bloodwork should I be requesting?

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πŸ‘€︎ u/TRTWHAT
πŸ“…︎ May 17 2018
🚨︎ report
Anybody experience penile growth while on testosterone.

I’m a 19 year old who was diagnosed with hypogonadotropic hypogonadism back in April. Since then I’ve been regularly taking testosterone injections every week and have seen around 30nmol/L of testosterone or 864ng/dL.

Before starting I was basically prepubescent. I experienced no penile growth and it was maybe around 3-4” erect with like 3-4” of girth.

My latest measurements came out at 5.5” length and 4” girth BPEL. Is there a possibility I will continue to grow from here? I have heard that I should wait a full year for the hormones to fully settle in. Has anybody had experience with this?

I’m basically experiencing puberty so i’m hoping the influx of testosterone will at least somewhat influence some kind of penile growth. All comments appreciated.

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πŸ“…︎ Jan 11 2022
🚨︎ report
I have a... unique medical condition. I have to go to college next month. Should I do online or in-person classes for the first semester?

Title might sound a bit weird, but let me explain. Basically, I have a condition called hypogonadotropic hypogonadism which means that at the age of 18, I haven't hit puberty yet - in my case, it was caused by a pituitary tumor. I only just recently started testosterone therapy, and I'm showing the first signs of puberty. But for all intents and purposes, I kind of look like a prepubescent boy, save for height. I will have to take testosterone for the rest of my life.

I'm supposed to start college next month. My college is located overseas, several hours away from home. Ever since I started getting diagnosed, my parents and I agreed that I'll do online for the first semester, for the treatment to start kicking in and for me to mentally adjust. The second semester will be in the second half of the year - perhaps by then I'll start looking more my age.

However, I'm beginning to have second thoughts. It seems like a lot more people are doing in-person classes despite of Covid, and I really don't wanna get left behind socially. I don't want to miss out on the full college experience. But I'm not sure if I'm physically or socially mature enough to actually attend college. I still look like I'm 12, for one thing. and I still have shit social skills.

Will people bully/look down on me for my condition? Will I be able to make friends? I haven't really been bullied a lot for my condition but that's probably because I go to a school of angels where most students are just really nice people. The most I've experienced are some friendly banter about my baby face or voice, which I don't really mind. But college is probably a different beast altogether. Plus, I'm going to another country so the culture is probably much different altogether - maybe the people in my country are nicer. The thing is, I was supposed to start college last year but I took a gap year due to Covid. So another gap year is out of the consideration.

Another reason why I'm nervous is that college will be the first time I have to act like an actual adult. I've always been under my parents wing and this time I'll be alone, which is terrifying. It would probably be less terrifying if I look and feel like an adult.

Even if I decide to go in-person, I'm still not sure if it's possible to be fair... First of all, I don't know if my parents will agree to it, and secondly, how the hell do I continue healthcare in another country? I'll probably have to do some research about that...

I'm really confused a

... keep reading on reddit ➑

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πŸ‘€︎ u/ColdassConjecture
πŸ“…︎ Jan 14 2022
🚨︎ report
Mood swings from hCG and Clomid fertility treatment

I (34M) have secondary/hypogonadotropic hypogonadism caused by a pituitary prolactinoma. I didn’t respond well to first line treatments (dopamine agonist/cabergoline) so I went on exogenous testosterone and felt a million times better. Now, 3 years later, I’m trying to have a baby. I had a low-normal sperm count before TRT, and now 3 months into my fertility treatments, my sperm count is low enough to still be considered abnormal, but my doctor said it’s enough to make a baby with and it should improve with continued treatment.

My fertility treatment started out as 1,000iu hCG subQ every other day, in addition to the 100mg testosterone cypionate I was taking IM weekly. I did this for 2 months but my testosterone and estradiol went pretty high on that combination, so the testosterone was discontinued and 25mg clomid every day was added to the hCG, I’ve been on this combo for about a month, I haven’t done any new labs.

Within two weeks of starting the hCG, I felt moodier and more irritable, my appetite decreased (the appetite suppression is a good thing because I could stand to lose a few pounds) I wasn’t sleeping as easily or as deeply, and very interestingly, my sense of smell and taste drastically changed, suddenly some food I loved smelled repulsive to me.

When I discontinued the testosterone and added the clomid, the mood side effects became much worse. I was getting bouts of dysphoria, like the kind of sadness that hits you like physical pain (like you might feel from the death of a close relative). Even though I could logically realize that these feelings were irrational, it didn’t change anything, I was still experiencing it.

hCG is often backordered, right now I haven’t been able to get my prescription refilled for about a week, so I’m taking the clomid only now. Already, I feel much less moody and irritable.

I read that psychiatric side effects from hCG are uncommon and when they do occur, they tend to be pretty mild, but that hasn’t been my experience, I feel like it’s having a profound effect on my mood. I’m taking a fairly conservative dose of hCG too.

My primary care doctor (not the fertility doctor) told me that I should talk to the fertility doctor about the side effects right away, I was going to bring it up at my next appointment, but my primary care said that I shouldn’t wait so long. My primary care doctor said he wouldn’t advise stopping the fertility treatments unless I decide the side effects are unbearable or if I start ha

... keep reading on reddit ➑

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πŸ“…︎ Dec 04 2021
🚨︎ report
Check this study out that is current going on right now pertaining to HCG longer term use for hypogonadism.

https://clinicaltrials.gov/ct2/show/NCT03687606

"This study will evaluate the efficacy and safety of long term use of hCG alone or hCG plus hMG in the treatment of male patients with isolated hypogonadotropic hypogonadism (IHH). One third of the participants will receive hCG treatment alone and the other third of the participants will receive hCG treatment alone for six months, then the hMG will be added. And the last third of the participants will receive hCG and hMG treatment since the beginning of the treatment."

It ends on October 1, 2025.

This will be interesting.

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πŸ‘€︎ u/EZSwan420
πŸ“…︎ Nov 06 2021
🚨︎ report
I'm 18 (male) and I have not hit puberty. I'm 99% certain I have hypogonadotropic Hypogonadism. How do I get checked?

Here's some background about me. I was born a bit premature, my mom did a C-section for me (I'm not sure if that matters), and I had an undescended testicle from birth which was treated with a surgery when i was like 6 years old or something. I don't know what sort of surgery they did. This is embarassing, but I was born with a micropenis which I believe was treated when I was a toddler using hormonal therapy - basically they injected some stuff into my testis with a syringe. Fun stuff. My last treatment was when I was like 5 I think. I don't know what sort of condition I have now which leads to absent puberty, but I suspect it has to do something with my undescended testicles or lack of hormones. Also, my cock doesn't work =(

I found out that hypogonadotropic hypogonadism is basically consistent with all my symptoms.

>When GnRH deficiency occurs in the late fetal or early neonatal periods and is caused by a lack of the first intrinsic GnRH peak, which lasts until six months of age, the incidence of cryptorchidism and/or micro penis is high (5). Men presenting with HH that started in the pre-pubertal phase and was triggered by the intrinsic second GnRH peak exhibit eunuchoid body proportions, a delay in the development of secondary sexual characteristics, a high-pitched voice, pre-pubertal testicles, and delayed bone maturation

This literally describes me. The symptoms for Pre-pubertal hypogonadism (described in the table below that text) also describes me WAY TOO ACCURATELY. Here are the symptoms:

  • Eunuchoidal stature
  • Small testes (usually <6cm3)
  • Small penis (<5cm)
  • Lack of normal scrotal rugae and pigmentation
  • Small prostate
  • Scant facial, axillary and pubic hair
  • High pitched voice
  • Gynecomastia
  • Infertility
  • Lack of libido
  • Low bone mineral density
  • Low muscle mass, high percentage of body fat
  • Mild anemia

I have LITERALLY EVERY symptom mentioned in there! I could not believe it, but I checked off every symptom. Maybe except for low bone mienral density, because I can't exactly check that, but other than that - it describes me way too well. I think I hit the jackpot here. What do I get tested for? It says that this condition is very rare. Is this even possible to get checked for in my country? I live in a third world country (Indonesia) and the medical system here isn't that great. This makes me ex

... keep reading on reddit ➑

πŸ‘︎ 6
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πŸ‘€︎ u/ColdassConjecture
πŸ“…︎ Oct 07 2021
🚨︎ report
I'm 18 (male) and I have not hit puberty. I'm 99% certain I have hypogonadotropic Hypogonadism. How do I get checked?

Here's some background about me. I was born a bit premature, my mom did a C-section for me (I'm not sure if that matters), and I had an undescended testicle from birth which was treated with a surgery when i was like 6 years old or something. I don't know what sort of surgery they did. This is embarassing, but I was born with a micropenis which I believe was treated when I was a toddler using hormonal therapy - basically they injected some stuff into my testis with a syringe. Fun stuff. My last treatment was when I was like 5 I think. I don't know what sort of condition I have now which leads to absent puberty, but I suspect it has to do something with my undescended testicles or lack of hormones. Also, my cock doesn't work =(

I found out that hypogonadotropic hypogonadism is basically consistent with all my symptoms.

>When GnRH deficiency occurs in the late fetal or early neonatal periods and is caused by a lack of the first intrinsic GnRH peak, which lasts until six months of age, the incidence of cryptorchidism and/or micro penis is high (5). Men presenting with HH that started in the pre-pubertal phase and was triggered by the intrinsic second GnRH peak exhibit eunuchoid body proportions, a delay in the development of secondary sexual characteristics, a high-pitched voice, pre-pubertal testicles, and delayed bone maturation

This literally describes me. The symptoms for Pre-pubertal hypogonadism (described in the table below that text) also describes me WAY TOO ACCURATELY. Here are the symptoms:

  • Eunuchoidal stature
  • Small testes (usually <6cm3)
  • Small penis (<5cm)
  • Lack of normal scrotal rugae and pigmentation
  • Small prostate
  • Scant facial, axillary and pubic hair
  • High pitched voice
  • Gynecomastia
  • Infertility
  • Lack of libido
  • Low bone mineral density
  • Low muscle mass, high percentage of body fat
  • Mild anemia

I have LITERALLY EVERY symptom mentioned in there! I could not believe it, but I checked off every symptom. Maybe except for low bone mienral density, because I can't exactly check that, but other than that - it describes me way too well. I think I hit the jackpot here. What do I get tested for? It says that this condition is very rare. Is this even possible to get checked for in my country? I live in a third world country (Indonesia) and the medical system here isn't that great. This makes me ex

... keep reading on reddit ➑

πŸ‘︎ 2
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πŸ‘€︎ u/ColdassConjecture
πŸ“…︎ Oct 07 2021
🚨︎ report
On line Zoom meeting for female patients with Kallmann syndrome / hypogonadotropic hypogonadism.

On line Zoom patient meeting for females with Kallmann syndrome / hypogonadotropic hypogonadism.

Hosted by Dr Andrew Dwyer of Boston College, USA.

Sunday 5th July.

12:00 EST / 5pm UK time.

Leave a note here for a link to the meeting.

πŸ‘︎ 3
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πŸ‘€︎ u/ndsmith38
πŸ“…︎ Jul 02 2020
🚨︎ report
Hypogonadism and pituitary tumors

A bit of an update from my previous post about being 18 years old and not hitting puberty yet. I finally got all my test results done (hormone test, USG, and chromosome test.) My chromosomes turned out to be normal, so it's not a genetics issue. My endocrinologist said that there must be something wrong with my pituitary gland, so he wants me to get an MRI test. If I remember correctly, he said it has something to do with the lack of FH and LSH that my body produces.

I'm gonna share my hormone test results, but it is in another language so I apologize for that - you should get the gist by seeing the numbers and unit used. I have no idea what any of these numbers mean, but according to the endocrinologist it's extremely abnormal and I basically have the testosterone/FH/LSH levels of a baby. It seems that my assumption in that reddit post was correct after all - I do have hypogonadotropic hypogonadism.

Now, my endocrinologist didn't say this outright, but after doing some Googling I found that it's likely the case that my pituitary gland has some sort of tumor. Specifically, a non-functioning pituitary adenoma. After all, that's what the MRI is testing for. I don't see any other reason for my hypogonadism - I have no other health issue besides this, and I can smell good (rules out Kallman). Am I right in assuming this, or is there any other reason?

This is what stresses me out ultimately, because if they do find a tumor, would they need to do surgery on it? Having surgery is a phobia of mine, and having surgery on the brain is basically my worst nightmare. I tried to do some research but I haven't found any sources about pituitary tumors specifically pertaining to hypogonadotropic hypogonadism. I can't ask my doctor because I have to meet him after I get my MRI results. My MRI is scheduled in about 2 weeks, and getting the results will also probably take weeks as well, so it'll be a long time until I know what's wrong with me and chat with my doctor about it. My anxiety can't wait that long.

If it is a tumor, can I just ignore it and use hormone replacement therapy to replace my missing hormones? I don't think the tumor is doing any additional harm right now besides limiting my FH/LSH. Do I have the right to refuse surgery if my doctor or parents wants me to do it? This is mostly the result of online research which can't be th

... keep reading on reddit ➑

πŸ‘︎ 4
πŸ’¬︎
πŸ‘€︎ u/ColdassConjecture
πŸ“…︎ Nov 05 2021
🚨︎ report
For those who took testosterone therapy for delayed/absent puberty, how long did it take until you saw results? What's the timeline?

18 years old and have not hit puberty. After months of diagnosis and talking with A LOT of doctors, I was diagnosed with hypogonadotropic hypogonadism (absent puberty due to low testosterone due to low gonadotropins) and finally started testosterone therapy today. I'll be doing intramuscular injections monthly. I know it's not exactly Kallmann Syndrome, but it's basically the same thing. AFAIK Kallmann is just a subset of HH with anosmia, which occurs in about 2/3rds of CHH cases - well I'm the other 1/3rd. I figured treatment should probably be the same for us.

So for those of you who have done testosterone therapy to induce puberty, may I know how long it takes to see results? Can you tell me a general timeline for when I expect things to happen?

I'm gonna be starting university March next year, hopefully would have improved by then. I don't wanna look like a 12 year old kid hanging out in the dorms. Honestly, my main concern is probably my voice, since there's a good chance I'll be doing Uni online anyway, at least for the first semester. Plus, as someone who plays games online, it's really embarassing to be mistaken for a 12 year old when you're 18.

Also, can I expect to grow taller, or at least grow taller faster, during the testosterone therapy? I'm about below average to average height, for my country at least, but I know I could be way taller since my dad is very tall and my 15 year old brother is way taller than me. Plus every male in my family, both paternal and maternal, are quite tall. The genetics should be on my side.

πŸ‘︎ 3
πŸ’¬︎
πŸ‘€︎ u/ColdassConjecture
πŸ“…︎ Nov 24 2021
🚨︎ report
For those who took testosterone therapy for delayed/absent puberty, how long did it take until you saw results? What's the timeline?

18 years old and have not hit puberty. After months of diagnosis and talking with A LOT of doctors, I was diagnosed with hypogonadotropic hypogonadism (absent puberty due to low testosterone due to low gonadotropins) and finally started testosterone therapy today. I'll be doing intramuscular injections monthly.

For those of you who have done testosterone therapy to induce puberty, may I know how long it takes to see results? Can you tell me a general timeline for when I expect things to happen?

I'm gonna be starting university March next year, hopefully would have improved by then. I don't wanna look like a 12 year old kid hanging out in the dorms. Honestly, my main concern is probably my voice, since there's a good chance I'll be doing Uni online anyway, at least for the first semester. Plus, as someone who plays games online, it's really embarassing to be mistaken for a 12 year old when you're 18.

Also, can I expect to grow taller, or at least grow taller faster, during the testosterone therapy? I'm about below average to average height, for my country at least, but I know I could be way taller since my dad is very tall and my 15 year old brother is way taller than me. Plus every male in my family, both paternal and maternal, are quite tall. The genetics should be on my side.

πŸ‘︎ 12
πŸ’¬︎
πŸ‘€︎ u/ColdassConjecture
πŸ“…︎ Nov 24 2021
🚨︎ report

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