Low testosterone

[Geppili]

Hi

Does anybody have experience of a DS with low testosterone? My 14 yr old DS has an accelerated paediatric referral on Thursday for a testosterone level of 1 and other physical symptoms. I want to reassure my son, but do not know what to expect. Some of the potential diagnoses are quite serious. I haven't told my DS this, but he is googling. He's really dreading the physical exam. Do any of you wise women have any words of wisdom and experience? Thank you.

I don’t have any wise words accept I’m awaiting a referral for my ds (same age as yours) to Paeds for lack of puberty but the wait list is almost a year..... how do you know he has low testosterone? Is that done by bloods?

Wow thank you for a reply!

Yes. We took him to GP because of various things he told us. GP did physical exam and referred us straight to Pareds which we waited for for about two months. The GP immediately booked a serum testosterone test which has come back v v black low. He has various other physical symptoms including gynocomastia.

He is 14

My ds doesn’t have gynocomastia although he is quite tubby so very conscious of his ‘boobs’ as he calls them... he has gastro issues which have added to his weight.... that and he is well over a growth spurt and is very small compared to his peers, no voice change, no hair, no kind of growth at all.... with almost a years wait... he will nearly have left secondary school by the time they see him. I’m hoping he is a ‘late developer’ ...

Did your DS come to you about delayed puberty? Mine did, he was so bloody brave! He's in pieces because he feels so far behind his peers. I'm most anxious about Klinefelter syndrome and, god forbid, pituitary disease. He is overweight, very tall and sweet!

God, I'm so sorry for your son's delay. When I booked to see the GP initially, he poo pooed my anxieties. He only had to see him naked to make the referral before even having blood tests. It was really good to get the low T results because at least we know something is out of kilter.

I can keep you posted about our experience! I have found it next to impossible to find discussions about this health issue. I'm so grateful to you for replying.

He had joked about it because of how small he is compared to peers but he has ASD so perhaps behaves a little differently as he still walks around naked when he is out of the shower! GP didn’t question my judgment on it at all and did a referral straight away, now just the length of time to wait! Wish I could afford to go private as if he needs hormones or whatever I want to get him the help ASAP.

It’s horrible thing for them to have to deal with isn’t it? It’s hard enough being a teenager!

Yes it really is. My DS is tall and hefty for his age but he is extremely small genitally and it's killing him. He has v sparse body hair. No facial hair, high voice (which he hates). He is dreading the physical aspect of the appointment.

You could ask your GP in the meantime for a serum T test. If that comes back very low, maybe his referral will be accelerated. My husband found you can get a karotype gene test for Chromosomal abnormalities for £500, but his appointment came through.

My ds has all of that except very short... his voice isn’t ‘high’ as such as he has always had a reasonably low tone but doesn’t sound deep and gruff like most teenagers? Yes you are right I might ask for bloods... it was mentioned but as we spoke to GP during lockdown I didn’t want to risk going into the hospital to get bloods done (can’t have kids done at doctors) but I may now request this...

My DS had bloods done at GP

Ours won’t touch kids. Have to go to the actual hospital. I think I do need to re evaluate this and ask for these to be arranged due to the wait list.

Makes you realise how inconsistent NHS rules can be!

My step son has Klinefelter Syndrome. It's rarely diagnosed. We have been through it all with him in the last 18-24 months. If you've got any questions I'm happy to help

TeenMummy thank you so much for your reply. I Just on work break and found it. It is so kind and generous of you to reply. I will write more when I have finished work. My DS has cried everyday this week when he has got home from school. He and I and his Dad are longing for answers. He is dreading the physical exam and he just keeps saying things like: I want to be normal. I want a family.

Tryingtokeepsafe I realised that my DS did have his bloods done at the hospital. I was remembering my recent blood test and mixing the memories of them! Menopause brain!

So our story.
DS found out he had Klinefelter accidentally. He had sudden onset of testie pain, abdominal pains and vomiting. We took him to ED aged 17 and on exam they noticed both testicles are smaller than what they should be. No one else picked them up. DS is quite open in terms of who he wants there for the exam. His personal choice (not that he ha a choice) but would be to be examined by a female. He doesn't ever want Dad in the room but is more than happy for me to be with him. I feel it's male on male thing.
Development wise his skinny average hight, low muscle mass, has facial stubble or well can grow it, no body hair as such he has pubic hair and arm pit hair but no body hair on his chest or anywhere else. His legs are a little small and has some adult hair on them.
We have confirmed Klinefelter in November 19 following months of tests. He's had the Genetics test, been under the Genetics, Urology and Endrocrinology teams at a local and London hospital. Now he's got an appointment in the new year for a potential surgical sperm extraction to see if he has any chance of kids. His sperm doesn't have anything. I think that was the worst part for him. The exam is normal and sadly lots of different specials will want to exam him. It's going to be hard for a 14 year old but it's normal. Can I help more?

TeenMummy thank you so much. I will reply. Just back in from work and feeding the starving troops!

Thanks so much to everyone who has posted and/or pmed me. I really appreciate it. We had our appointment today. They took bloods for about 12 blood tests including the definitive karotype test for Klinefelters. The doctor was incredibly reluctant to make any comments until those blood tests are in. He thought he was within normal parameters for puberty and said it may even be a case of late puberty. He explained that giving testosterone this young can stop growth (height). So basically we are awaiting the results which should've back in a week. My DS is gutted because he wanted 'treatment'. He did really well though.

I'm glad things have went well today and fingers crossed for the bloods to be back soon.

Hi, not sure if this thread is still going? My 14 year old also hasn't started puberty, blood test showed all hormones were very low. He is short for his age, 149cm which is 2nd to 9th Centile and no body hair at all. (Weight is 50% centile) He's really distressed about his height so our GP referred us to a paediatric endocrinologist, we had a 6 week wait which considering the pandemic isn't bad at all, although it was an eternity for DS! The specialist examined him and put him at a stage 1 for underarm and public hair (No hair) and a stage 2 (5-6ml) for testicular development which she says is the very early stages of puberty, she thinks that he is in the early stages of puberty but due to him being so distressed and being teased at school, she has put him on testosterone, 100mg inj once a month for 3 months, with a review after that. She said it's 100% safe and will not stunt growth in any way, he will still reach the adult height he would have reached without treatment, she said it will kick start his puberty and get things moving. He had his first injection 5 days ago. Best of luck, being so far behind their peers affects teenage boys badly!

@rhiane13 Hey there I'm still here. Feel free to message me if you want to speak to me about my experiences.

What is his muscles like? Does he have any or is it still like child age like and not growing either? With the low hormones did they mention any of the sex hormones like LSH and FSH? It's positive that he's now on testosterone.

We had a phone consultation with our consultant on Thursday and we are going back for more bloods to check the testosterone and also the Vit D levels

Hi, I wouldn't say that his muscles are completely child like as he used to be a gymnast so he's pretty toned. Yes they checked testosterone, LH and FSH and all very very low, I have a copy of his blood results i'm looking for them now

Fingers crossed the testosterone does the trick and kick starts his puberty. Thats good by the sounds of it that if he has good muscle growth then thats a good sign. Our fella has low muscle on his upper arms and calfs they are pretty skinny too, on the last physical check up a few months ago he's got some pubic hair, some hair on his belly, little underarm hair and he is loosing his hair on his head but still no chest hair, very little leg hair too.