Brain/Pituitary Tumors Community
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Avatar universal

numb lips

Hi, I am a 32 year old female, I was diagnosed a year and half ago with pituitary microadenoma 8x6 mm my blood tests showed only an elevated total testosterone, so my Dr said it is non functional, I did another MRI a year ago which said I have a microadenoma 2mm!! Dr was surprised and advised to repeat the MRI after a year. my symptoms were male pattern hair loss, fatigue, easy bruising and time taking recoveries, very frequent and severe headaches, acnes, hair on my face, weight gain and too much difficulty to lose weight even with proper diet and exercise, very irregular menstrual cycles. so my endocrinologist put me on metformine and finasteride which I have taken regularly for the past year but all my blood works still show elevated total testosterone and my fatigue has worsened severely. some days I can't get out of bed at all. Now, for the past few days I have numbness in the left side of my lips and sometimes left side of my tongue, it is worse some hours and better some other hours but it is gradually getting worse. Is it related to my diagnosis and if it is, what kind of pituitary adenoma might cause lip numbness? I will do another MRI next week, but my Dr usually doesnt explain much to me, would appreciate your recommendation.
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Avatar universal
A tumor can change sizes... but to reduce like that can mean the tumor flattened out (that happened to me) or you had pituitary apoplexy, or the MRI was different and the tumor was hidden. Was the MRI done as a dynamic pituitary MRI? Is your endo a neuro-endo?

Do you get copies of all your tests? Does the doctor test bio-available testosterone? That actually tells the doctor more as it breaks down testosterone into other types - like free, total and gives you sex binding hormone and does the doc do ALL the female hormones including DHEA sulfate?

Hormones can certainly cause the hair loss - but not usually numbness. That may be something else. I would make sure that you have copies of everything - and research more when you get copies to make sure that you are being tested adequately. I hear all the time that people have *x* type tumor - but honestly, non-functional tumors tend to get big quickly - so your is not following the pattern so you have probably something else. I would get another opinion at a pituitary center. It sounds to me like you have a more cortisol centered issue with the weight, acne etc issue - and your doc is ignoring the potential. Cushing's is difficult to diagnose and so you may have to see what is going on to see even if that is in the realm of possibility - or growth hormone or whatever.
Avatar universal
Thank you for your helpful response. My endo isn't neuro-endo, he did free and total testosterone. Free testosterone has always been within range, only the total has been high. With what you pointed out, I now realize why my Nuro Surgeon was surprised when he saw the second MRI, as non functioning tumors tend to grow fast. What is a normal growth pattern for a non functional tumor? I mean how much does it usually grow in a year? I was tested for Cortisol initially and it was high, then i did a 24 hour overnight suppression test which came out normal so they said you can't have Cushing's. growth hormone also was normal, DHEA Sulfate was normal too. I get copies of my tests. my family and friends tell me that your symptoms are due to depression and anxiety but I'm not depressed and they don't believe me. Do you know how accurate MRI results are? I have done dynamic pituitary MRIs, giving these confusing results, I mean could it be that they are wrong? just last night I read on a website that when the tumor grows from one side, it pressurizes the optic nerve but from the other side, it causes lip and facial numbness, could that be true? I guess I have to repeat the MRI asap, I am just not sure of its accuracy. Thank you so much for your support, I feel better already
Avatar universal
I am only a layman - but from what I know, non-functional tumors tend to grow more and they can grow out of the sella and hit more of the nerves and blood vessels to cause mass effect issues.

Your endo ran a dex suppression test... ACK! Great... Let me explain something - dexamethasone basically takes the hormone ACTH out of the picture, so in reality, when someone suppressed, it really shows that the pituitary is MORE the issue so it is a better test of source aka location of the issue than of exclusion. I failed the dex suppression test as did hundreds of my friends - and we all had Cushing's... so we all think that test is pure bunk.

Your symptoms are in line with pituitary issues (cortisol causes anxiety! and depression but you don't have to have all the symptoms) and Cushing's. MRIs can vary widely. My tumor actually disappeared before surgery - but it was there when the surgeon opened me up (something I cannot make them listen to now when my levels are off the charts!!!) so hormone levels are much more important than imaging.

If a tumor grows UP it can compress the optic nerve but it would have to be much larger. It if grows down and into the cavernous sinus, it can mess with the nerves and blood vessels down there. Mostly small tumors stay within the sella turcica and don't cause much but headaches and hormone hades (and that is enough).
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