r/kallmann_syndrome

Pretty desperate - have IHH rather than CHH but can’t find any other place to put this and have help. Know this is a bit long, but any help would be really appreciated

I was diagnosed with HH at 18 and started TRT, which I did for about 5 years or so. During this time, my levels stayed at around:

500 ng/dL Total T
60 pg/mL Free T
0.7-2.41 mIU/mL FSH (higher number was early on, then plummeted)
0.2-1.51 mIU/mL LH (higher number was early on, then plummeted)
48 mIU/mL
32 nmol/L SHBG
4.6 g/dL Albumin

Since then I switched over to hCG (3,333 3x/week) a year and a half ago. Before adding FSH, I was at:

700 ng/dL Total T
66 Estradiol

Started FSH (75 3x/week) 5 months ago with the following results:

3.2 FSH
1.1 LH
58 Estradiol

SA taken two weeks ago came up completely empty, stating:

1.5 mL Semen volume
Incomplete Semen Liquefaction
High Semen Viscosity
8.5 pH
No sperm found

Lifestyle changes are priority #1, as I’m overweight and don’t eat healthy anymore. Doing those and taking some supplements.

Doctor said not much else to do, besides a microTESE and wants to stop treatment after.

I want to understand what’s happening - my understanding was that if I had primary HH, hCG wouldn’t be working at all. Since it’s able to be converted to T, would this mean that there should be some hope?

Tomorrow I am seeing a new endocrinoligst for the first time with the intention of getting a higher dose or different treatment. I have been on testosterone gel for three years but not much has changed. I was on 20 mg a day until recently when I persuaded my endo to increase to 40mg but I still don't think it is enough and I don't think the gel is effective for me this is why I am going to a new endo. Also I was officially on 20mg a day but often I did 40mg because I noticed by the time I got a refill from the pharmacy I still had a lot left in the dispenser. This endo is in the same healthcare system so they will have access to my blood tests.

I got my levels tested in February and they were sub 200 and I got my levels tested last month after being on 40mg officially and I tested at over 900 and I was dumbfounded at first because there is simply no way my levels are that high. I don't feel or look like my levels are anywhere close to that number. My endo has always told me to apply before getting my levels tested and for whatever reason I finally listened for my last blood test. I could not figure out why I tested so high. Then I found out putting gel on before a test spikes your levels so I am not sure why my doctor was VERY adament about me putting the gel on before tests everytime. But this is the same doctor who wanted to keep me on a low dose for the rest of my life so that might explain it.

So I am going to a new doctor tomorrow and I want to be properly prepared on how to get a higher dose/change treatment. I am a little worried because the endo they are having me see is not even listed on the hospital's website under endocringolists. I thought about trying to see a different doctor but I made the appointment just a few days ago so I figured it would be low risk high reward. I was actually pl anning on swapping to a different healthcare system so if things dont work with this doctor I will just do that.

My goal is either to get a higher dose and or change how I get the testosterone (injection or pellets). Or I want to try different treatment like HCG or FSH. I am interested in HCG because I thought there might still be a chance to go through "normal" puberty even though I am 21. I got this idea from a guy on youtube who did not start any treatment until he was almost 26 and he was on HCG for his first 2 years on treatment.

Another plan I have for the future is to visit a testosterone clinic

Found out around 19 I had hypogonadism after barely going through puberty while everyone else around me just developed normally. Spent years on Tostran gel with barely any changes, constantly being told to “wait longer” while feeling completely left behind.

Eventually moved onto Nebido and Sustanon and finally started developing properly facial hair, body hair, height changes basically getting the puberty I should’ve had years earlier. Then recently got told I actually have Kallmann syndrome, which explained a lot but also messed with my head even more.

Now I’m on HMG and HCG and my sex drive is all over the place either insanely high or completely dead. I don’t even fully know my sexuality because it feels like my sexual development got delayed for years. No partner or anyone and just trying to figure out who I even am while feeling emotionally and physically behind everyone else.

So, guy with Kallmanns Syndrome here. So I knew I had something because I was getting tests and injections (went through a period where I was doing It myself with Testosterone for a while) a lot as a kid but I didn't know what it was.

Silly I know but as well as this I am autistic, dyslexic, dyspraxic and Bisexual so i probably was just going where told for a while, until I went through a break up two years ago when I, stood with my arse out waiting to get my injection I get every 12 weeks asked what it was and was told it was this. Went home, did a quick look up and found out there wasn't barely any support groups for a rare disease that 1 in 7000 people have in the UK so it's nice have a small corner of the internet where people can relate.

Anyone else on Nebido just instantly become obsessed with the gym, because if I'm going to be on what is basically legal steroids I may as well take advantage of that.