Does anyone have any experience with a pituitary tumour?
What happened? Did you have surgery?
Printable View
Does anyone have any experience with a pituitary tumour?
What happened? Did you have surgery?
...=( 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.
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.
My uncle's girlfriend and boss's son both have one, the same kind (name escapes me?) They haven't been removed, just managed.
one of my best friends had one and she had treatment, but it wasn't removed surgically as far as i'm aware.
My dad was just diagnosed with one last week. He's unsure whether he has to have surgery or not at this stage.
Thanks for replies. When it was diagnosed, were they referred to a neurosurgeon or an endocrinologist in the first instance?
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.
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.:
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.
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.
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
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.:
Prolactin! thats what my friend has high levels off. sorry i couldnt remember it before.
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.
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.
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.
Hi MD, sorry it has taken me so long to get back online.:
It really depends on the position of the 'tumour' as to what they would do. In most cases they try steroids to shrink it initially, but they do not always respond. Its good that your DH has not had any physical symptoms that lead to the diagnosis, usually this will lead to surgery almost immediately.
In saying all this, all cases that I see end up in surgery, because i work in Neurosurgery, so i obviously dont see the patients that are medically managed.
Regarding the Acromegaly, yes most of them do, depending on the tumour type, so not in a prolatinoma (men have more feminine features, less hair growth and can develop breasts)...
Most family members also say that they have always looked like that, but if they go back 20 years through photos they can see that changes have taken place. Most pit tumour develop over a long period of time, so the changes are not as noticable to the patient, family or friends, unless there has been a long absence.
I agree with em, dont let a GP manage this, you need a Neuro and endo consult if it has not already happened, not because its really really serious, but because you need an expert so that misdiagnosis or treatment doesnt occur...
Not sure if you have read up on it much, but these types of things are rarely something that would cause a patient to represent to hospital, unless it is a surgery related problem (CSF leak) or endo problem, sometimes patients would need a synthetic hormone to regulate urine production post surgery (most temporary, but some people need a nasal spray for life).
I am not sure that this helps, obviously i am speaking from my experiences on the ward where i work, im not a doctor or an expert...
Let me know if you want anything else answered
Double post
Thanks very much for your reply SammieJane. We're organising an endocrinologist appt in the first instance, and then if necessary we'll get a neurosurgical opinion if it's warranted (and it may not be, apparently the IGF-1 was high but only slightly so) - which is a good thing. I'm hoping it can be managed conservatively. That's really interesting about the acromegaly, DH doesn't believe me but I said the endocrinologist will take one look at him and make that conclusion straight away :lol:. I was thinking I might drag out some photos from when we met (he was 19 back then) and take those along to the appt.
Good luck MD with the appointment, hoping that it can be managed conservatively, but if surgical intervention is required it is a fairly simple and quick proceedure.
Thinking of your DH and let me know if there is anything else i can assist with
Hi MD. My DH has acromegaly so naturally we know quite a bit about pit tumours and their management. DH sees an endocrinologist and has had surgery but they weren't able to remove all of the tumour so it is now medically managed as best as possible. His growth hormone levels were many many times normal and are still out of the normal range but much better than they were. If you look at photos of him over the last 10 years the changes in his appearance are very noticeable.
Good luck with your appointment and please don't hesitate to ask me any questions. I hope it goes as well as possible xx
Thank you so very much for posting Bun. :hug: How did your DH's acromegaly first get picked up? Looking back did it start suddenly or were there signs that it had been developing over a long period of time?
DH was very lucky his tumour was picked up when it was. No one in the family noticed the physical changes but he happened to be working in finance at a hospital and a Dr there asked him to get checked out. It also turns out that some friends of his, a couple who are both doctors, had discussed it between themselves but never said anything to him and they felt terrible after he was diagnosed! If you look a photos now you can see that it had developed over a few years at least, but he was only around 26 when diagnosed and the tumour must have only been present after the end of puberty or he would have kept growing taller due to the tumour (gigantism), but he is normal height for his family. So he most likely had the tumour for somewhere around 6-8 years before diagnosis.
When is the appointment? I think bringing along photos from the last few years could be helpful, but it is also highly likely that an endocrinologist will be able to make a possible diagnosis just by looking at him. There are a lot of telltale physical characteristics. Now that I know the characteristics I think I can almost pick it! There are some famous actors with the condition and it is fairly obvious when you know what you are looking for.
Good luck and let me know how it goes xx
Thanks Bun...are you going to tell me who the actors are or do I need to guess them for myself? :lol: Besides Andre the giant, of course....