Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
My son went to his GP about two weeks ago for a referral to a sleep center. He's a night owl (as am I and my father) and he's been having trouble getting a night job. I suggested he might want his condition to be medically validated so he could report it to unemployment and they might start referring him to night jobs.
* Age: 21
* Sex: Male
* Height: 6'1"
* Weight: unsure, about 25 pounds overweight
* Race: eurasian, primarily caucasian
* Duration of complaint: 5+ years (body odor)
* Current medications (if any): none
* Related issues: sleep disorder, strong body odor
He was assigned a new GP (his old one retired). My son went off into the office and got his checkup, then came out to ask me to talk with his doctor. He seemed confused. I went into the office to talk to the doctor, who told me he believes my son suffers from Acromegaly. He told me this is also called giantism. I didn't really know what he was talking about but my son is 6'1" and about 20-25 pounds overweight. As with the sleep disoder, my son is the third generation of tall, large-boned people and we're all a little plump. I asked the doctor if this was something genetic and he said "no". He could see my son is built a lot like me and I told him he also looks like my father but the doctor was adamant that my son was presenting alarming symptoms. he also mentioned the magic words "Body odor". My son has very strong body odor and no amount of showering or deodorant/spray tames it.
The GP insisted my son go for some blood tests and was quite alarmist, although he refused to share any details other than to list symptoms (large hands/feet, thick tongue, prominent forehead, body odor) and to say Acromegaly is life-threatening.
When we got home he looked it up online and found out about the non-cancerous brain tumor and too much HGH. My son was terrified. He fasted and then went back to the office to get his blood work results. It took five days to get them back and I watched him suffering quietly every day waiting for his results. The results went straight to his doctor so he has no idea what tests were done or what his levels were.
The doctor said the results came back negative and we were both relieved. I told him he needed to go back to the doctor and find out what other conditions this could be. My son came back and said the GP said it wasn't saying anything. He had no explanation for the body odor or physical symptoms and gave a referral to a sleep center. My son says the doctor refused to talk about Acromegaly any more or do any other tests for a second opinion. He suggested my son shower more often to combat the body odor and exercise and lose 25 pounds to make his hands and forehead look smaller. After that my son said he was hustled out of the office for the next patient.
My son is scared, and so am I. From "You have to take this very seriously because it could be life-threatening" to "You can completely ignore it" is a very abrupt shift. We don't have a lot of options for a local GP so I don't want to push too hard and piss him off.
My son is 21 but he's never really dealt with doctors on his own. He's been generally healthy other than the B.O. He wants my help but I don't know what to do. Our previous GP was a woman with a much more relaxed and informative attitude. I don't want to baby my son but I've seen him moping around the house the past couple of days and I feel like if there's something I can do I should try to do it.
Also, if there could be some sort of hormonal imabalance that causes the B.O. I'd like to know for his benefit. I think it would be a lot easier for my son to get a job if he didn't smell badly all the time. He doesn't smell "sweaty". It's not salty/yeasty. It's just its own bad smell. Maybe like something decaying?
We have no idea if this is fine, if he needs a second set of blood tests or a MRI to confirm as a second opinion, or if he should try to meet with a specialist and see if we can go around the GP.
I'd assume the blood test was for IGF-1. IGF-1 is essentially the growth modulating factor driven by expression of growth hormone, used as a marker as it stays at a somewhat consistent level while GH is sporadically excreted by pituitary or nay tumour. Assuming that was normal, and not of concern, then all should be well. This would have driven further investigation through tests for adrenal function and GH release control if of concern. I'd keep an eye on any long term changes in shoe size or peripheral eye sight issues as real world markers.
Acromegaly can be familial but very rarely, having said that I was passed down mine from my mum.
Might be best to put the interaction down to the GP being an arse and pretty much forget about it all as the blood work was okay.
I'm relieved to have it confirmed (even online) that it's likely nothing. I'm going to guess this means the tests are pretty firm? I'm used to being told that serious issues need 2nd/3rd opinions, and results tending to be ambiguous.
We'll still watch for changes but I'll try not to worry in the meantime.