Pituitary tumour?

[Sammiejane]

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.

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

[Sammiejane]

Double post

[AnyDream]

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 . 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.

[Sammiejane]

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

[Bun]

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

[AnyDream]

Thank you so very much for posting Bun. 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?

[Bun]

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

[AnyDream]

Thanks Bun...are you going to tell me who the actors are or do I need to guess them for myself? Besides Andre the giant, of course....