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Enlarged Pituitary Gland
Hi everyone,
This is my first time posting on a forum (of any kind). I've been having headaches for as long as I could remember. Longer than six years. They would fluctuate from every day of the week to 4-5 times a week. Last year, I went to a neurologist who ordered an MRI of my brain. Apparently the radiologist made a note for the doctor to look at my pituitary gland so another MRI was ordered with contrast. The neurologist told me that my pituitary gland was on the "larger side of normal." Also, he ordered blood work which revealed that my b12 was on the "lower side of normal." He wanted to put me on small dose of blood pressure medicine for my headaches. I didn't take the medicine and I never went back.
Fast forward exactly one year. I went to an endocrinologist for a second opinion. He, too, ordered an MRI with contrast. My results came back yesterday. My pituitary gland has grown slightly since my last MRI. The scan did not reveal a tumor. The doctor pretty much said that there's nothing to do except let it keep growing. He said surgery and radiology would be too drastic (and I agree) so he prescribed me Dostinex because its been proven to shrink pituitary glands. However, my prolactin level was normal. He said he felt "iffy" about one of my levels, I think it may have been cortisol. Its was 10. But that's in the range of normal. I don't know, maybe it was something else. It was a lot of info to take in at once. Anyways, after that he ordered more blood work for ferritin and prolactin again.
Basically, my question is: Does anyone else have this going on? My headaches are getting severe (although less frequent) and my vision is starting to change. Not double vision or anything, but it just hurts to look. Hard to explain. Does anyone know what I should do? Any help is appreciated.
Thank you.
This is my first time posting on a forum (of any kind). I've been having headaches for as long as I could remember. Longer than six years. They would fluctuate from every day of the week to 4-5 times a week. Last year, I went to a neurologist who ordered an MRI of my brain. Apparently the radiologist made a note for the doctor to look at my pituitary gland so another MRI was ordered with contrast. The neurologist told me that my pituitary gland was on the "larger side of normal." Also, he ordered blood work which revealed that my b12 was on the "lower side of normal." He wanted to put me on small dose of blood pressure medicine for my headaches. I didn't take the medicine and I never went back.
Fast forward exactly one year. I went to an endocrinologist for a second opinion. He, too, ordered an MRI with contrast. My results came back yesterday. My pituitary gland has grown slightly since my last MRI. The scan did not reveal a tumor. The doctor pretty much said that there's nothing to do except let it keep growing. He said surgery and radiology would be too drastic (and I agree) so he prescribed me Dostinex because its been proven to shrink pituitary glands. However, my prolactin level was normal. He said he felt "iffy" about one of my levels, I think it may have been cortisol. Its was 10. But that's in the range of normal. I don't know, maybe it was something else. It was a lot of info to take in at once. Anyways, after that he ordered more blood work for ferritin and prolactin again.
Basically, my question is: Does anyone else have this going on? My headaches are getting severe (although less frequent) and my vision is starting to change. Not double vision or anything, but it just hurts to look. Hard to explain. Does anyone know what I should do? Any help is appreciated.
Thank you.
I get a chilled, lavender tube for my ACTH, but if they *bin* it, it can still degrade. I used to see my ACTH (in the thousands) drop to about 800 or so - over a thousand point drop. I felt sorry for normal or slightly abnormal people as that far exceeded the range and there was no way anyone was getting a good (aka accurate) reading.
Your tumor is considered a macro-adenoma. It is, for pituitary tumors, large, and thus needs treatment. A neurologist is not competent to treat pituitary. If you wait, you can lose your sight or have a stroke - it all depends on where your tumor sits.
The watch and wait is not an appropriate treatment plan for you. Get copies, and find a pituitary center.
Your tumor is considered a macro-adenoma. It is, for pituitary tumors, large, and thus needs treatment. A neurologist is not competent to treat pituitary. If you wait, you can lose your sight or have a stroke - it all depends on where your tumor sits.
The watch and wait is not an appropriate treatment plan for you. Get copies, and find a pituitary center.
I've uploaded 8 pictures to my profile. That's the only way I knew how. I took out all the names, but please let me know if I missed one. I read that my pituitary was 11mm (only 10mm first MRI last year). I don't know if 1mm is considered to have "slightly" enlarged. I feel like 1mm is a pretty good size when it comes to pituitary. Which is a little upsetting because once again they made it seem like no big thing. I have no clue what any of my lab results mean, so I will try to research it myself but would greatly appreciate insight from any of you. Thank you so much for all your help!
I requested my lab results. I have them uploaded to my computer, but is there a way I can upload them here? It's a lot of information and I'm hoping you guys can help me form some questions to ask my Dr. on my next follow up. Everyone has been very helpful so far and I have found out things I wouldn't have found out on my own.
opps
nah the tubes dont need chilling before they draw, only after
you should see them place them on ice
nah the tubes dont need chilling before they draw, only after
you should see them place them on ice
yeah....
doesnt sound like they are handling them right
when i have my bloods....they have a plastic bag filled with ice that they put inside another plastic bag and the ACTH goes into the second bag, so not directly on ice. Its transported immediately.
They also always make me fast for my 8am Bloods
Sounds like you had the same MRI i had
I wouldnt be self diagnosing :). But i would be wanting them to check every pituitary hormone
I will tell you, many people do have incidental adenoma;s on their pituitary gland that never cause any problems. But any symptom causing issues should be followed up thoroughly.
doesnt sound like they are handling them right
when i have my bloods....they have a plastic bag filled with ice that they put inside another plastic bag and the ACTH goes into the second bag, so not directly on ice. Its transported immediately.
They also always make me fast for my 8am Bloods
Sounds like you had the same MRI i had
I wouldnt be self diagnosing :). But i would be wanting them to check every pituitary hormone
I will tell you, many people do have incidental adenoma;s on their pituitary gland that never cause any problems. But any symptom causing issues should be followed up thoroughly.
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