macroadenoma non-secreting and need for Sx?

[sunshine0266]

I am 47 and I was recently diagnosed with a Macroadenoma of the pituitary gland. They say it isn't hormone secreting, but I am gaining weight, teeth have spaced out, feet and hands are larger. My hormone levels are within normal limits except Thyroid is slightly low.  I didn't have symptoms of pituitary tumor, but did have dizziness, blood pressure 160/104, sweating profusely, and ..... . My blood pressure is fluctuating/labile. Do I need to have an MD who specializes in Pituitary glands or is a Neurosurgeon ok? He wants to watch and wait... how imperative is surgery?

[JessieD82]

Have they checked your field of vision? I had my nonfunctioning macroadenoma removed at the advice of a neuro-optomoligist who was concerned that eventually the growth would cause permanent vision loss. I was also told that because a tumor is not a normal thing to have that you can't know the extent to what it is doing to your body until it is removed.

[rumpled]

If you have a MACROadenoma - then you usually need surgery whether or not the lesion is hormone secreting or not due to the mass effect issues. Some tumors though can be reduced with medications so surgery can be avoided.

However, what you are describing sounds a lot like acromegaly - high growth hormone. So it could be that your doctors are not experienced in determining and testing pituitary tumors. You do need a specialist and you do need a pituitary center which can be found at larger hospitals and university centers. I have links in the health pages to the right which can give you more information and may help you find a doctor.

Just some FYI - even if a tumor is non-secreting does not mean it is not of concern. Usually those are the ones that get super large and mean those need more treatment, not less. Then there are those that have some hormones that can cause more symptoms - and it sounds like you need a special doc to get the sets of testing. Time of testing as well lab handing is critical so you need a good doctor and a good lab.

You may need a surgeon but you cannot just go straight to one - they only take referrals after you need surgery AND you need a special one that can do the surgery AND I highly suggest that you get super duper experienced one as the outcome is very very very much predicated on their experience so you want a very experienced person using endoscopic tools.

Watching and waiting - really bad advice IMHO. You may not need surgery - but you certainly need better evaluation and treatment.