I am really confused. I have an empty sella, but 12 years ago - per non-contrast CT report, sella was normal All in this region = "normal".
Now - I am dizzy, walk like a drunk, have falled A LOT - often head first. Walk every morning with a massive headache, and my typing has become messed up and/or dyslexic when it used to be fine.
Non contast MRI showed empty seller with pituitary remnant on sella base. I did not see films or report - done when I was in hospital.
Tested for eplisepy - neg. But bloods showed low growth hormone (not a prob as a child), and borderline hypothroidism.
Repeat tests 2 months later - still low growth hormone, still borderline thyroid, "normal" cortisol, BUT prolactin twice normal levels (was not tested 1st time). Suggestive of secretory microadenoma. Other hormone tests done - I do not have results for.
Anyone know what this combo (growth hormone, high prolactine, low-ish thyroid) mean? I am not - per multiple testing, not menopausal or perimenopausal. I have NO libido, the horrible headaches (can wake me at night), can have night sweat after being like a frozen brick for half the day (and average not-hot, not-cold surrouding temp). I forget things - like words I have used for decades, or the second half of a sentence I am trying to say.
I mix words (like "the tree is in the bird", not "the bird is in the tree") and now - just today - I have lost an entire day. A total day is gone. Took me half the day to actually believe it and kept thinking husband etc were "messing with me" as a joke. But no......I have no memory whatsoever of yesterday and STILL feel it is a day earlier.
I know this is long, but does ANYONE have any idea what might be wrong?
And if my fossa etc was "normal" 12 years ago (examined for prolonged galactoreh (sp)....doesn't this mean the empy sella thing has occurred SINCE this old scan? The old scan does NOT say sella membrane (can't recall tech. name) was NOT intact etc, nor that anything "wrong" od "different" was inside sella.
But now, it is FULL of CSF and the pituitary is squished to a remnant.
I am scared. Don't have private insurance, so have to go to specialist I am at present, but I don't think he is very good. Just wants to brush you off and be done with "your file". I haven't seen neurologist yet.....wait list just for an apt is TWELVE MONTHS.
Any ideas? What causes this weird trio of pituitary hormones? How can one be too high when pituitary so mangled?
As a PS....was hit across head repeatedly by 1st husband, knocked out etc (prior though, to the "old scan") and when I asked if any of this stuff was related the endocrinologist just laughed in my face.
ANY HELP.....even GUESSES (I know real diagnoses and stuff can't be given over the net)....but ANYTHING at all would be soooooooo appreciated.
How are your other pit hormones - LH, FSH, ACTH, - but just because they cannot see back there with the empty sella does not mean there cannot be a prolactinoma hiding back there, as for the rest, sounds hypopit.
I would not see a neuro IMHO, I would find a neuro-endocrinologist to help you. You need hormones, not a neurologist. Seen a neuro-opthomologist at all either?
Oh and trauma can cause issues - why they do not acknowledge is weird but there are papers on it - put pituitary and trauma in your favorite search engine. Especially if you were knocked out.
Ask for a copy of your MRI report. It may help to see exactly what the technician said. Severe hormone loss would be expected with empty sella, but if even a small portion of the pituitary is functional, (and it sounds as if your ACTH is still intact, and some TSH), you could have high prolactin for several reasons. Try to see a neurosurgeon if you can - you may need to have that CSF drained.
At least, get to an endocrinologist and get missing hormones replaced. Rumpled is right - you need these hormones to feel well. The hormone loss will eventually affect every organ in your body. You will just get more sick without pituitary hormone replacement.
Sorry to hear about your probs. Have you had a child...there is a condition called Sheehan's. Google it. But basically because of the hormone fluctuations from a pregnancy the pituitary gland implodes. Thus=empty sella for most. When you have very little pituitary function your prolactin levels can be elevated. There is a hormone called Prolactin inhibitory Hormone that is sent to the Pit gland from the Hypothalamus via a very narrow stalk. If you have any stalk damage then your prolactin levels could be high and everything else low. (I'm in this boat too but my gland does not function because of surgery and my pesky Cyst when it was still there damaged the stalk) But like everyone has said get thee onto hormones ASAP you will feel better.
My thoughts. Horselip
You could be talking about me minus the beating you took from your x. I have high prolactin, empty sella, low thyroid function-hashimotos disease, high growth hormone, high igf1-with no visible pituitary tumor. Have had breast milk since my son was born 16 years ago. I did nurse. I had a child about every 5 years and nurses no longer than 14 months. I had three children total. You tell me how you can have milk that long. I have had several doctors tell me...normal. I think they must all be whacked. I have no memory. When you said about the tree & the bird thing...I though Oh my goodness, it's me to a t. I was driving down the driveway last fall & said to my daughter, look at all the beautiful pictures on the trees. I get screaming bad headaches for the last 15 1/2 years. Recently found out I have glucose intolerance. Now on Januvia, if that helps you. Keep searching for your answers! Don't you ever give up & let someone make you believe that you are a hypochondriac. If I had, I would not know that I had a herniated disc pinching a nerve (surgery fixed it), hashimotos disease (still a work in progress), glucose impaired, high growth hormone, & now possibly a pituitary tumor or intracranial pressure or both. I'm at a loss of where to go from here. Oh yeah, did I mention...I had strokes. Been told that by a world renowned neurologist. Oh, don't worry about it he said, I doubt you even felt them. Oh shoot, that must have been the night I awoke to go to the bathroom & couldn't walk straight & fell into my closet & broke the doors off. Yeah, he's probably right, I shouldn't worry, what's a stroke & some mini-strokes to go with it? I'm gettin' by.
God bless you in your journey to your health. I know I certainly have struggled. I hope you don't have to look as long I have. Is there a way for us to talk in person? I would so love to speak to you via email. We're so much the same & yet slightly the opposite, but yet whatever we find out we could certainly share information. I have been at this for years. I would be happy to share any info with you to make this easier for you & I hope you would be willing to do the same. Take care.
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