Anyone else been diagnosed with a pituitary gland tumor? I have many neuroendocrine tumor markers showing up for over a year now and they think they have finally found where they are originating from. Recent MRI showed mass in pituitary gland that was not there a year ago. I am terrified.
Posted by Kreynolds (Member # 15117) on :
I have not had a tumor, but was recently in the hospital and they did a CT scan and it showed a "damaged" pituitary gland.
This then caused me to have Secondary Adrenal Insuffiency AKA Addisons Disease.
I know that Chronic Late Stage Nuero Lyme will cause this problem.
I hope all is well and keep us posted.... Is it a Binine tumor?? I hope so....
Posted by jkmom (Member # 14004) on :
My husband (doesn't have Lyme) had a pituitary tumor a few years ago. He had surgery to have it removed and is fine. He does have his hormone levels checked every year, I think, to make sure it hasn't come back but I don't think it is expected that it will.
We live in a medium sized city and his doctor here told him to look on the internet for the best doctor he could find and not to let someone local do it. We ended up going out of state to a doctor who had done more than 4000 of these surgeries. Other than travel costs, it was all paid for by insurance.
Try not to worry until you know more. PM me if you want any more information.
Posted by karenl (Member # 17753) on :
I was diagnosed with an adenoma in the pituitary by Mayo in 2007. It was an MRI. They did not do other tests,but there were no monoclonal antibodies. I would be interested which other tests your doctor ordered and which lab can do them. My adenoma was confirmed to be still there by ART testing this year. I was never worried, we all have so much risk with our disease. A friend of mine was diagnosed by Mayo with 18 with a pituitary problem and she is still alive. at 50. I agree, we should take it serious, but I think it is very common in lyme. Karen
Posted by cordor (Member # 9449) on :
Karen- I have been positive for BETA-HCG (Not pregnant/total hysterectomy and 51 yrs old!) Positive for Anti-HU Antibody Positive for Neuron Specific Enolase Positive for 5-H1AA Positive for Chromogranin-A Elevated Prolactin Low ACTH LOW IGF Binding protien-3 Elevated Parathyroid hormone
Posted by 4Seasons (Member # 14601) on :
I have had a benign, prolactin-secreting pituitary adenoma for 30 years.
I take a medication called bromocriptine that keeps the tumor shrunken and the prolactin level down.
I hope your problem is as benign as mine. It predates my lyme infection by two years.
Posted by Robin123 (Member # 9197) on :
Cordor - this is why it's important to check in with everyone here! Everything we're told ain't necessarily so - hm - sounds like a song I know...
In the 80s my prolactin was elevated (I notice you list elevated prolactin), had an MRI and other tests, they thought I had a pit tumor, I had the surgery, and lo and behold, no tumor, just hyperplasia.
The surgeon declared me a medical mystery. Repeat that phrase over and over until hypnotized, for years...
I couldn't handle bromocriptine so the prolactin stayed elevated. I found out three years ago I actually had Lyme disease. Mystery solved.
But it gets more interesting, now - can I have a drum roll please? The prolactin is dropping, to less than half of what it was.
The only thing I can attribute this to is my latest treatment, which is taking a little bit of noni juice and grape seed extract capsule everyday to successfully shrink lipomas -
the noni juice and grapeseed extract are both anti-inflammatories, so my guess, and it is only a guess, is that they are de-inflaming my brain too.
So I'd like to ask you how high your prolactin count is. Mine shot up to 230, and has been dropping this past year. Now down to 100.
Posted by Peedie (Member # 15355) on :
I have one I have lived with for 20 years. It's tiny - used to occasionaly put prolactin in my blood. Had periods when I lactated for no reason and weight gain. Dx'd pre-lyme by MRI. -p
Posted by karenl (Member # 17753) on :
Cordor, thanks for the tests. I probably get these done one day. My prolactin was not elevated some weeks ago. Do you test positive for bartonella? I personally believe bartonella is causing a lot of lumps. I had a cyst in the kidney, lumps in breast, a little ball in the ear and one behind the ear, growth in wom. They all went away when I rifed the bartonella frequencies and was on 15 HH a day. I would recommend testing for bartonella at Fry lab( pm me if you need more info) before you decide for surgery. I would recommend anybody with cysts and other lumbs to make sure it is not bartonella. If you have a bartonella infection all kinds of surgery are not good. Wish you the best.Karen
Posted by cordor (Member # 9449) on :
Thank you Karen. No, I have never tested positive for Bartonella
Posted by cs (Member # 15270) on :
Ok, here's a weird one. Have had lyme for probably over 20 years, not diagnosed until a year and a half ago. About 5-6 years ago I was diagnosed with a small pituitary tumor, and was being treated for various hormone deficiencies which we assumed were being caused by it, including thyroid, cortisol, and growth hormone deficiency.
Since starting the lyme treatment, hormone levels have been gradually improving, including a drastic improvement in IGF-1 so that I am almost off of the growth hormone at this point. At last MRI, the pituitary tumor seems to be shrinking, and is now classified as a "possible" pituitary tumor as it is less clear and defined as well. Have no idea what to make of it, perhaps the lyme or co-infections caused it, but to have it shrink with treatment? Weird, Anyway, really curious to see if it continues to shrink at my next year's MRI, but if I am able to get off the growth hormone shots, that will be amazing. All due to abx it seems, crazy stuff!
Posted by kimwg (Member # 19094) on :
Coincidentally, a brief article about a man with a pituitary gland tumor was featured in today's New York Times Magazine:
Good news -- he made a full recovery. And his PCP apologized for missing the diagnosis for years. (I like to fantasize about the parade of docs I sought out prior to the lyme diagnosis apologizing to me, but I know it ain't gonna happen!)
Posted by cordor (Member # 9449) on :
up
Posted by Lymetoo (Member # 743) on :
They are often benign... let's hope for that!!
I have been on growth hormone for a low functioning pituitary. Have never had an MRI or CT to check it though.
Guess maybe I should!
Posted by lemonsnotlymes (Member # 19926) on :
This is amazing. MY pituitary is also borderline low functioning!
LLMD thought maybe trauma from a car accident I had (whiplash) could be one reason or maybe not.
I am not taking a shot of growth hormone, but somthing I spray under my tongue everynight to help stimulate my own production of growth hormone. LLMD thinks that should help.
I was hoping that I might grow an inch or two from it, but no such luck.