Prolactinoma - does anyone have experience of this condition?

[higgle]

My DS1 is coming up 18. Last year he was diagnosed as having a prolactinoma and is now on steroid treatment to reduce the pituitary and give those bits that produce all the hormones - including organising testosterone - a chance to get going again. He had virtually no testosterone production when all this started, about 8 months ago and is due to go back to see his specialist for more tests next month. He thinks he is getting a bit more hairy and his voice may be a bit deeper, but he is still stuck as looking about 13/14 and has no facial hair. He is a bit down about it as he feels it makes it hard for him to make friends, and I'm concerned it seems to be taking ages for the treatment to work. Has anyone else had any experience of this condition - how long does it take to become "normal" in terms of development? He will be off to uni this autumn and is a bit trepidacious about it all.

Anyone?

I am no expert, but does he have a lot of dairy products? I have read that (naturally occuring) hormones in dairy can have influence on the human hormones.
There is a similar case in my family (adult, not treated or diagnosed) and he is virtually addicted to dairy, so refusing to do anything about it.

Nightcat, thank you for your response, no he does not eat a lot of dairy products - apparently these things just happen and we were lucky to get it diagnosed before it went any further as the enlarged pituitary pressing on the optic nerve can cause blindness.

Sorry I can't help. But may I suggest you post the same thread on the general health section. There are some GPs over there...
Good luck

Hi,

I have a prolactinoma that stopped me ovulating... I was on this medication called Cabergoline and it worked really quickly. I wasn't ovulating for 8 months, took Cabergoline (0.5mg twice a week), my period returned in a month and we got pregnant the next cycle. I stopped the medication while I was pregnant. Again, no periods... I got back on it (lower dosage this time - 0.5mg once a week) and got my period back again in less than a month and we've managed to conceived number 2 in only a few months! Not sure why your son is having steroid treatment but can you ask his endocrinologist about alternative treatment if it isn't working as fast as you like? More info here about Cabergoline being used as treatment for prolactinoma

My endocrinologist is hopeful that once I am on the medication for a few years, the tumour should go completely (fingers crossed!). Good luck with your son.

Ax

Thanks, angel1976, didn't notice your post until today. The steroids are to protect him because the prolactinoma has knocked out most of his other hormones, not just the testosterone. He is due some more blood tests and another consultant appointment next month so will raise these matters then.

No worries higgle. I hope you get your son's problem treated. Sounds to me like they are treating one of the symptoms (lack of testosterone) and not the cause (which is the tumour). Apparently Cabergoline is meant to not only redress the hormonal imbalance but also to shrink the tumour (permanently hopefully!). BUT I am not a doctor, so there might be reasons why you son is being treated with testosterone first. For me, the medication worked very fast very quickly and my endocrinologist was very hopeful that in a few years, my tumour would be gone for good. Good luck!

Hi Everyone
I was diagnosed with a prolactinoma 14 years ago after the birth of my first son which i recieved fertility treatment to concieve.I had a MRI scan to ensure my piturity gland was not swollen i was then put on Bromocriptine it took a while to get dosage right.I was told they were unsure i would be able to have any more children going by my previous history. But within two months of getting the dosage right i was pregnant.i stopped the medication during pergnacy and while breast feeding .Once i finished feed i started medication.They have tried to take me of the medication but without medication my prolactin levels are too high.I am now on a low dose and that keeps everything right.i see the doc every six months just to check everything is ok.

If anyone needs Info on
Men with this health condition and experience of then best to try Reddit not mumsnet. I have one of these tumours and there were loads of men discussing there experience over on that site . Hope your sons condition improved :)