Pituitary tumour?

[Maruschke]

I was diagnosed with one after I was sent for an MRI for high prolactin levels and a few other abnormal tests (which were missread) a few years back. This let to a heap of misdiagnoses. And a second MRI revealed it had dissappeared on it's own. I was sent to an endocrinologist, but not until I needed a second opinion- a local physician was trying to handle it on her own- made me very sick! So I would demand to get seen by an endocrinolgist, and secondly if no symptoms and tumour is tiny then I'd leave it be and get a re scan a month or so later. But if big you will definitely need to see an endocrinologist and they will refer you to to have surgery if need be, as they can shrink certain one's with drugs

Em... don't answer if you don't want to, but did your prolactin levels sort themselves out on their own? Mine was elevated on all the BT's we had during the two years before we had DD1, and are still elevated now 18 months after her birth. I have found that my local GP knows didly squat about prolactin and fertility in general.

[allycat06]

My 20 year old BIL has one. It was only discovered about a year ago when his vision started going a bit funny. Turns out it was the size of a golf ball and pushing on his optic nerve. They aren't exactly sure how long he's had it for but it pretty obvious it hindered his development in some way. Once he started getting it treated it was like he suddenly went through puberty. His is being treated with drugs to shrink it, no surgery...by a neurologist I believe.

[*star*]

Hey MD - I know nothing on this one, but wanted to give you a hug - is it you that has this or someone close to you? Hope it can all be managed easily.

[Sammiejane]

Hi MD,
I am a Neuro nurse so have looked after stacks of people with these, will read the post later as i am about to put MJ down for a sleep and will come back.
replying so i subscribe and can find this later!
If you ahev any specific questions i will try and answer.
xx

[~TT40~]

Prolactin! thats what my friend has high levels off. sorry i couldnt remember it before.

[Maruschke]

em - I can still get foremilk and hindmilk now, and haven't bf for 17 months (it's not much, but enough to know it's there). Did it make you subfertile? Sorry to be so nosey, but it's inhibiting ovulation of mature eggs in me.

[AnyDream]

Thanks everyone for your replies. I understand prolactinomas are quite common and are usually treated with medication rather than surgery.

It's my DH. Returned a high IGF-1 level when they screened his blood for bone/athritis disorders because he has a persistant foot injury. They referred him for an MRI straight away and he appears to have a microadenoma. 1-3 mm.

Sammiejane - because this is causing a functional effect (ie altered blood chemistry) do you think they are more likely to do a bit more screening then watch & wait, or give medication, or proceed straight to surgery?

Also - with the patients you see, do many of them show the excessive growth signs? I'm really wondering about this because DH has always had very large & wide hands and feet, pronounced brow, big mouth/lips. I freaked out when I saw a picture of an acromegaly hand. But his hand has always looked like that. I'm wondering if this isn't something he's had all along.

[Eenee]

Em... don't answer if you don't want to, but did your prolactin levels sort themselves out on their own? Mine was elevated on all the BT's we had during the two years before we had DD1, and are still elevated now 18 months after her birth. I have found that my local GP knows didly squat about prolactin and fertility in general.

kind of, sometimes they were high and other times normal so who knows I stopped seeing the Dr cos they kept making me sicker but gave me no answers then kept handballing me to different specialist. The galactorrhoea (sp? pregnancy has made me have terrible spelling!) however never went away, but that never bothered me- more why it was occurring concerned me more then anything.