Pituitary tumour?

[AnyDream]

Does anyone have any experience with a pituitary tumour?

What happened? Did you have surgery?

[~TT40~]

...=( i just lost my post

wtf, I pressed post and its gone!!

*sigh*

ok, what i was saying is a friend of mine has high levels of ..something (sorry i cant remember exactly what it is) but one of the causes is a pituitary tumour. As far as I know currently they are rulling out every other cause, and if nothing else works then they will discuss investigating the pituitary.

(not as detailed as my original post...)

Sorry if that doesn't help much, but if it does go down that road for her, I could ask her more about it and have some more information.

[PumpkinZulu]

My poppy had a pituitary tumour. I was young at the time so cannot recall heaps, but he had to have it removed. They removed it by going up through the nose. He was pretty uncomfortable afterwards, and had to see a doctor to make sure it didn't come back. Not a lot of info, sorry.

[luna moth]

My uncle's girlfriend and boss's son both have one, the same kind (name escapes me?) They haven't been removed, just managed.

[sloane]

one of my best friends had one and she had treatment, but it wasn't removed surgically as far as i'm aware.

[Tinks]

My dad was just diagnosed with one last week. He's unsure whether he has to have surgery or not at this stage.

[AnyDream]

Thanks for replies. When it was diagnosed, were they referred to a neurosurgeon or an endocrinologist in the first instance?

[Maruschke]

Yep I have one, a prolactinoma? I causes elevated levels of the hormone prolactin in the blood. Usually harmless, although macro prolactinomas (any tumour over 1 cm) can cause vision problems, headaches, and if left untreated, cause osteoporosis.

You can get meds to lower the prolactin (that's what I'm doing, only have a small tumour) or have surgery as a last resort.

These tumours aren't cancerous, but it still makes me feel a bit odd.

[Eenee]

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

[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

[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.

[~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]

Marydean that's what mine was a micropituitary adenoma and it wasn't a prolactinoma- but I had crappy Dr's so not sure what they do for treatment when it's the right way. Not sure what the measurements were either sorry. Hope your DH is ok and it can be resolved easily.