Hi, I'm 15 and I have been ill for 2 years now. I have a shunt in to drain the fluid from my brain, as this is what they thought was the problem, until a few months back when I wasn't responding to treatment, and a new MRI showed up an enlarged pituitary gland - I'm not sure of the size.
I was referred to an Endocrinologist who said that a pituitary tumour was the top of his list, and when he compared the scan to one I had had a year ago, he said it had shown up as bulky before.
He said that because I was 14 at the time, as it is a very hormonal age, someone could have maybe thought that was the reason for it, but as it had increased significantly in size in a year, this could not be the reason now.
I then had lots of tests which showed low FSH, high LH and insulin resistancy. They thought this could be down to having polycystic ovaries - which we are not sure of yet, but we were told that it was a non-functioning tumour.
I saw a pituitary surgeon about removal, who said that obviously it was a very big thing if they have to remove the whole gland and they want to be completely sure they are doing the right thing. I then went to see my Neurologist who has been dealing with everything from the begining of my care, who has said that although the pituitary gland is enlarged, it does not have any bumps indicating a tumour, so they still think it is because I am at a hormonal age.
I am now extremely confused, and in a lot of pain, getting worse all the time. I have lots of symptoms of a pituitary tumour and hearing it was just because of my age after what was said before what a real shock.
Does anyone know if the pituitary gland can be signifcantly enlarged just because you are at a hormonal age, and also if not seeing any bumps in the gland would be a reason for there not to be a tumour even if it's enlarged?
Obviously I don't want to have one at all, but I am so confused after being told outright that I did! Thank you for your help!
Was the endocrinologist a neuro-encrinologist - deals with pituitary disorders on a daily basis, or does mostly diabetes? In the office, was there a lot of diabetes stuff around only, or was there some pituitary pictures at least? You want a doctor who deals in pituitary as they know more. Even though a normal endo knows some, they don't know enough -and that can be why you are confused.
As for the neurologist - they simply do not know how to treat pituitary tumors. It is not something they do - so the lack of bumps etc. is bogus. I have a picture of my tumor in my profile - you can see it. BTW - every kind of tumor differs - Cushing's tumors tend to be soft and gooey, and other tumors can be harder, and there are also cysts, hyperplasia (mine was hyperplasia) and I know hundreds of people with pituitary tumors - not one - zero ! people say on there reports that the lesion looks like bumps. I had two of them - the slimey hyperplasia and an adenoma - a prolactinoma.
What has not happened and needs to happen with you is that you need proper testing to find out what kind of tumor it is as some tumors can be treated with medication -so if you have a type that can, you should be treated ASAP. So testing is what is needed and a lot of it.
An enlarged pituitary 99.5% of the time does mean a pituitary tumor but it cannot be well visualized on the MRI. Was your MRI done so that you had contrast (and injection) and were you in the MRI while the contrast was given, or did they pull you out? If they pulled you out, you did not have a proper MRI for a pituitary.
You need to get to a proper pituitary doctor and get the right testing. Get copies of everything you have, and find the right doctors, and then you can get help.
It is true that the pituitary enlarges somewhat during pubertal growth, and this is normal, so I can see why your doctor would say this, however, there are other reasons for enlargement, without signs of a tumor, that should be explored, such as an inflammatory disorder. Lymphocytic hypophysitis comes to mind.
Have you had an ANA level test (anti-nuclear antibodies) or a C-reactive protein test, to measure inflammation? If not, ask your doctor to do these.
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