Pituitary Tumor Support Group

Hello everyone,

I have not been diagnosed with a pituitary tumor... I have had several MRIs and MRAs over the past 4 years (all within normal). My storey is horribly long and I will not bore you.

However, what bothers me is that I have had low ACTH levels in the past.

My concerns is for the past year my right eye vision has had a blurred vision that is worsening. The opthamologist is at his wits end, stating there is nothing he can do.. the eye ball looks fine. BUT I have glaucoma which is unusual for a young person with normal pressure.

So... drum roll... my question

Did or does any one here have/had a non secreting pituitary tumor that grew very slowly (such as years 4 years or longer) with eye issues as the first problem that did not show on the MRI at first because it was a micropituitary??

Honestly this has been debilitating for me as my profession is on the computer, it is scary to think what if I lose this eye and there is nothing anyone will do for me.

Thank you for your time, ShawnaZ.

Post edited by: ShawnaZ, at: 12/15/2010 10:26 AM

Hello - I am sorry to hear of your frustrations. You're certainly not alone in that respect! The only thing I can contribute to the answer you are looking for is that I believe for there to be vision issues associated with a pit tumor, it would very likely be large enough to detect in an MRI. Usually when a pit tumor causes eye problems (as was the case with me), that is because it has grown to a large size, often times much greater than 1 cm (the macro category).

I hope this is helpful.

Ed

Hello Ed,

That is exactly what I was looking for... if a tumor would be impossible to miss on an MRI!

I appreciate your responce.

I have had frustrations but I am blessed with a wonderful family. I also found a great provider who stumbled apon a medication (anti-seizure) which has significantly helped in many other areas!

I wish everyone here, warm wishes and health for the new year! Thank you again Ed.

Take care ShawnaZ

Hi ShawnaZ,

Pit tumours dont usually cause any visual disturbance's until theyre too big, and extend onto the optic chiasm, compressing the optic nerve. They are usually macroadenomas.

I would be concerned with the blurred vision as well. Maybe you can find another opinion?

Happy and healthy new year wishes to you too!!

Hi Brenda,

Thank you so much... I thought so as well, but with the hormones being out of wack! Well it was ?able.

The blurred vision is really frustrating and mostly they are taking the "wait and see game" which I rather not do with my vision. I have done that with other things.. but not my eye sight...

Again, Thank you and Happiest of New Years to you as well, ShawnaZ.

Were your ACTH tests done properly? Chilled EDTA tubes, spun immediately after the draw? ACTH degrades in minutes after the draw so the problem with that test is it is messed up with the tech and they are typically not so happy or skilled (IMHO) at the testing since they don't see it often. My ACTH is in the thousands and if they mess mine up it drops by the thousand - way more than the range which is 6-48.