14 yo DS low testosterone- referral

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Hi all, just wondered if anyone knew what to expect when teen boy has very low testosterone levels?
bit of background, he has always been small and slight, low birth weight etc.

I have been expressing concerns for a long time that he was small, felt he wasn’t growing very quickly., was told repeatedly nothing to worry about, he is within normal ranges for height etc, lack of puberty within normal ranges. (Late bloomer etc)

Now at 14 he is just over 5ft, weighs about 7 1/2 stone.

Have finally managed to get the drs to send him for blood, and testosterone is very low (<0.4 nmol/L, normal range is apparently 6.1-27.1)

Also showing low cortisol (136 nmol/L, normal ranges are 185-624)

Annoyed that it’s taken them so long to take my concerns seriously, but more than that worried about the implications of this.
He’s been referred to the paediatrician but not sure how long that will take.

Just wondered if anyone had any experience of this and what it could mean?
GP has said nothing other than he’s referred him.

Thanks

DS has delayed puberty. He's 15. Once he was in the "system" it all happy quickly and he has had treatment to help kick start puberty. It's not done much so far so we might have to go back again.

Thanks for responding.

Do you think these levels could be indicative of just delayed puberty then? (I say ‘just’ but I mean something that could potentially kick start by itself rather than being something that doesn’t ‘sort itself out’ down the line)
As I said, Dr not really said anything, just that he would be referred, and I don’t really know what the numbers mean.

I’ve been googling, and it’s coming up with adrenal gland disorder etc, which all sounds rather worrying

Can I ask what treatment that is?

My DD is only 10 but same directory as OPs son. Always small and slight. Noticeably not growing compared to his peers now. He’s still in infants size shoes!

Can they only test for low testosterone at teenage years or should I ask about this now?

Basically we saw a paed privately they do a blood test and wrist X-ray - this is to see if the bones have fused meaning there is no growth potential. If they have not fused it means they can still grow.

Then we were referred to an endocrinologist they did a test to see if he could make testosterone.

He could and now he is having hormone shots to stimulate his body into making its own testosterone.

I'm not sure how it works for girls.

That’s good to know what to expect, thank you.

Im even more annoyed as the blood test were actually done in April this year.

Dr called me back when results are in, saying testosterone was low, but they don’t refer until 14.

Which to me sounded like it was normal if hadn’t entered puberty. He turned 14 early Sep, and has now been referred as still showing no signs. Been told to contact hospital if haven’t heard by Jan.

However, I just requested a copy of the blood test, and there is a note next to the testosterone level from the consultant biochemist, suggesting a referral to paediatrician, so this was back in April he should have been referred!
So really pissed off with the Dr, as he obviously could have referred him before 14.

But still not sure if the levels are low in general, or could be considered ‘normal’ in pre-puberty?

Really kicking myself that I should have pressed harder if it turns out there’s something that needs long term medical intervention, but trying to be kind to myself that I obviously just trusted the GP knew what he was talking about. Just annoyed at myself that I didn’t request the blood results myself earlier, because would have seen the note and could have chased it up.

Thanks for this

There was a previous thread here that might help OP

https://www.mumsnet.com/talk/_chat/4815820-teenage-son-with-very-slow-growth-any-experiences-with-hospital-referral?page=1

If you have the funds I'd honestly suggest you look at a specialist privately. My son was referred urgently and we waited months without even any acknowledgement that he was in the system. We decided this was his life, and it was time critical. Similar situation with my nephew. If you google paediatric growth specialist you will find a consultant in your region who will see you soon. I have given up on the NHS pretty much completely by this point.

Unfortunately it’s not at all within our means to go private. 😩

The GP has sent a referral, I’ve just checked it again, and it’s changed from ‘pending review’ to showing a date/time with ‘paediatric endocrine’ in the new year.

But then it also says YOUR REFERRAL WILL BE TRIAGED BY A CONSULTANT. YOU WILL THEN BE CONTACTED BY THE HOSPITAL TO ADVISE WHAT THE NEXT STEP WILL BE REGARDING YOUR REFERRAL.

So not sure what that means, if I have a time and date? Maybe things to do before appointment?

Not sure what happened with the formatting there. NHS seems to be just a postcode lottery, the referral was sent about a week and a half ago.

Thanks also for posting the link to the other thread, going to have a read through it now

What time of day did they do the bloods? Cortisol levels are most reliable if done first thing in the morning. Ultimately, I suspect he'll need to see a paediatric endocrinologist. If you live close to a big children's hospital, he might be seen directly by one, if you're near a smaller hospital you may be seen initially by a general paediatrician, who would usually organise some more tests (for instance bone age (wrist xray), and insulin like growth factor) and refer onwards.

I don't know anything about the medical side of it but my DS was that height and weight at 13 and a half then hit puberty at 14. He's now 5ft 10 at 17 though still quite young looking. He shaves but couldn't grow anything you would call a beard yet.

I found this that suggests that the testorestrone levels are normal in pre-puberty.

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=www.cddft.nhs.uk/media/545720/paediatric%2520reference%2520ranges%2520for%2520testosterone.pdf&ved=2ahUKEwj-rNahsMmCAxVtUkEAHT1AB3cQFnoECB0QAQ&usg=AOvVaw0rVXd8Hwj7_ONOakysD5nL

It was around midday, so 12/12:30 ish.

He’s been referred to the local hospital paediatrics dept, online referral now says ‘paediatric endocrine’, although I don’t think there’s a specific endocrinology dept there.
I’ve been looking through the trust website at the paediatricians, and one of them does say ‘interest in endocrinology’ so presume may be with them?

I guess I’ll have to wait until the letter actually comes through.

Wherever he’s actually referred, at least he’ll be in the system and get some answers.

My main concern is obviously whether this is something serious that will require long term treatment. I’m hoping that it’s just delayed puberty, but there are a few other issues he had as a baby which worry me about his growth in general (IUGR, and a hernia at 3 months old which unfortunately resulted in the loss of one testicle)

so I think I’ve always been very worried about his development (despite reassurances from professionals over the years).

All the men on his dads side are tall (shortest is 6ft exactly), so if it weren’t for those other issues, I probably wouldn’t be worried.

Was half convinced I’ve been paranoid, and then when I saw the results I was just like ‘oh shit’

Sorry, I’m rambling now!

This is really reassuring, thank you!

I would think they would be more interested in the low cortisol, that needs looking into in case of adrenal/pituitary issues and is a potential risk to wider health not just growth. So you might be seen quicker than someone whose child is just small if you see what I mean.

Yes, definitely, GP told me he would not have referred just based on height and weight, he said he wasn’t concerned about that, and did so because of bloods.

I’m worried about my son - he’ll very much on the short side.

I want him to have bloods etc but I don’t want to make an issue of it. Also aware time is of the essence if there’s an issue.

thst other thread is a bit scary - ugh - I don’t care if DS is on the short side but there’s short and there’s short

Did the GP examine him at all? I ask because my son has Klinefleter Syndrome and the only reason they ever found this was because of this testicle size when we were in hospital for possible testicle torsion (it wasn't) but this is how they started the process for seeing endocrinology and doing all the tests.

We stated puberty very late aged 15 compare to his peers they had facial hair and he didnt have any pubic hair (face, chest, groin). To this day now 25 is balding, no chest and very little facial hair after 2 weeks of not shaving. I hope the endocrine team get in contact soon

Thank you, yes the GP did examine him, he said the physical examination didn’t raise any alarms for him, but had referred him due to blood levels.

My DS did have a testicular torsion as a baby, due to a hernia in the groin, but were always told this would not affect his puberty or ability to have children or anything like that.

He also a few years ago had an accident where he was climbing a gate, and fell and landed on his groin, and cut open his thigh and had swelling to one remaining testicle.

I rushed him to A&E (as I had been told to when he was a baby if he ever had pain there or anything like that, as they would need to act quickly) they were brilliant and sent him to theatre in the early hours as they thought something may be damaged and need correcting but they ended up not cutting in to the testicular sack,as said sometimes that can cause more damage. They sent him for a follow up and said they were happy that there had been no lasting damage, but obviously for me I was so paranoid about him.

This history, coupled with the blood results were the reasons the GP referred him, but he said he wouldn’t have if it were just based on the physical exam.