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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.
25 Responses
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Avatar universal
Hopefully all will be well. Keep up with the monitoring!
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Avatar universal
Thanks everyone for your comments. Got blood results back yesterday. All hormone levels are normal. Pituitary gland will be monitored on a yearly basis. I've been put on Topamax for headaches. Hopefully it will help :/
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Avatar universal
If all the thyroid numbers are low or below normal then you do have central hypothyroid. This is difficult for many docs.  They want to go by your tsh levels vs the ft3 and ft4 levels. If your pituitary is not working correctly the tsh is a worthless number since the pituitary drives production of tsh
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Avatar universal
I just wanted to recommend the iHeadache app in case act's headaches had a different cause.  My headaches would start a few days after I had the artificial sweetener, making it hard to connect cause and effect.

Thanks, rumpled.  Sorry to confuse the post!  I was wondering about central hypothyroidism for me (which lead me to this thread) since my understanding is that if T3 and T4 are low, TSH should be high, indicating hypothyroidism.  I was trying to figure out if the type of HA that I get (behind my right eye) is similar to the ones experienced by individuals with a pituitary issue.  

On at least a couple of occasions, all 3 lab results (T3/4 and TSH) were pretty low for me (not below the the low value in the reference range, but just barely above it).  If TSH and FSH aren't behaving properly, it made me think the pituitary could be the culprit.  But I wasn't intending to start a new thread within a thread.  And it seems strange that TSH would be low and FSH high (premenopause).  Again, thanks, I have another doc appt in mid Sept so I'll keep trying to figure this out.  
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Avatar universal
In that case, the dostinex was not doing you favors. I hope the doc tests you better.

Sandy: it is confusing (at least to me) to add a new story into an existing one for another person... so now I don't know about your scan at all?  It is hard to know without testing over time at the right times for pituitary. Headache by itself is not enough to just say pituitary and low thyroid can be thyroid, unless the TSH indicates central hypothyroidism.
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Avatar universal
I can relate about the headaches being a nightmare.  I used to get headaches behind my right eye and looked into sinus issues (sinuses were clear), I had a B12 deficiency, saw a neuro.  Eventually the neuro told me that what I was experiencing were 'just headaches' (I kept thinking there was an underlying pathology going on).  The 'just headaches' remark inspired me to try a headache app and I used iHeadache to help identify potential triggers.  I figured out that artificial sweeteners trigger these headaches for me.

I still wonder if I could have a pituitary issue since my FSH is high, all my thyroid hormones have been low at times (TSH, free T3 and free T4) and now I get the headaches sometimes even though I'm careful to avoid the sweeteners.  And I get some blurred vision.  I'm going to talk to another MD.  Every doc I've seen so far blows off my pituitary concerns.  I had a scan 5 years ago but none recently.   Good luck and let us know what you find out.
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Avatar universal
Sorry I should have been more specific. My prolactin levels were normal before I took the dostinex. It was at 9. I think the endo that prescribed it didn't know what else to do since all my hormones that he tested came back normal so he just gave me dostinex. This endo doesn't let people take medicine that they don't need. He wants the get to the bottom of what is causing my enlarged pituitary and not just treat it with medicine hoping that it decreases. I never liked the dostinex. It made my headaches worse. They were excruciating. So I'm glad he took me off them.
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Avatar universal
Uh, the levels are normal because of the dostinex normally and one is usually on the repression med for long times, sometimes lifetimes. That is not normal.

IS this a neuro-endo? If so, find another. And the doc should not ignore a bulky pit, it is well known to potentially be an issue.
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Avatar universal
Well, this endo had me stop both my b12 shots and dostinex. He says that my prolactin is normal so no need for me to take it. He (in his words) "treats causes not symptoms" so he wants me to stop taking those two medications. He took my blood and put one vial in a thing that began spinning and the other vial in a fridge/freezer looking thing. so I think that's what you guys mention earlier. I go back September 2nd for results.
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Avatar universal
Glad you are seeing another doc! Keep us posted!
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Avatar universal
Thanks everyone for your responses. I'm seeing another endocrinologist tomorrow so hopefully he will be able to give me some answers. Or at least order more tests to get to the answers.
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7734321 tn?1393759964
Reading your results... they pretty much seem normal...but they havnt checked a 1/3 of what i had checked...not that i can see.

Your Pituitary is mildly enlarged 11mmx13mmx10mm. A normal gland can be 9mm. There is no evidence of adenoma. So im guessing you have a bulky gland like i did. There is no evidence of anything else on your scan which is a good thing :).

Just to give you an idea... this is what they checked of mine after they found i had a Bulky gland...

FBC ( full blood count)
ACTH
8am Cortisol
Midnight saliva cortisol
24hr UFC
U E &C ( Urea Electrolytes and creatinine )
urine steriod profile
Glucose
Prolactin
TFT (thyroid function test )
plasma lipid study
FSH (follicle stimulating hormone )
LH ( lutinising hormone )
Progesterone
E2
Somatomedin-c
serum Androgenic hormone investigation
ESR
LFT ( liver function test )

Then i had MRI Head
CT from neck to pelvis

Bilateral Inferior Petrosal Sinus sample

That just gives you an idea of how many tests are done to check a Pituitary gland fully

By the way i had like 4 rounds of testing one lot each month for 4 months, just to confirm findings.
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Avatar universal
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.
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Avatar universal
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!
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Avatar universal
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.
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7734321 tn?1393759964
opps

nah the tubes dont need chilling before they draw, only after

you should see them place them on ice
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7734321 tn?1393759964
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.
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Avatar universal
Oh and I assume the tubes are not chilled (at least not before my blood is draw) cause they are sitting on a table in the room, held up by the tray with te holes that they use to stand them up.
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Avatar universal
My blood pressure has always been normal, so I didn't feel like this was something that I needed for my headaches. The neurologist pretty much brushed the size of my pituitary off saying that it was on the larger side of normal but nothing to worry about. The reason I went for a second opinion a year later was because my vision started changing and I worried that it may be something to do with my pituitary. It a very mild change, but I figured I would get a second opinion just in case. The endocrinologist ordered another MRI and my pituitary had grown slightly. I really didn't think the blood pressure medicine was right for me. I don't even think the dostinex is right for me but I decided to take it since what I've researched says it has been proven to shrink the size. But my prolactin was normal when he checked it.

He checked thyroid levels and other stuff, but everything came back normal. I don't know. Part of me just wants to pretend there's nothing there just so I don't have to worry about it.

Rumpled, it was administered while I was inside the machine. I'm not sure about the handling of the blood tests exactly, but the doctor told me I didn't have to fast and as long as my blood was taken before 9am it was fine. No urine tests were done. I didn't get a copy, but I will ask for one on my next follow up. I don't know what you mean by "spinning the ACTH immediately". They draw my blood, make me double check the name on the tubes and sign a sheet for acknowledgement, and I leave. I don't know what's done with the tubes afterwards.

I looked up the symptoms for Cushing (which I hate doing cause I self diagnose myself with pretty much everything lol) but I only have two of the symptoms. I have excessive sweating. I can just be sitting here and my arm pits will sweat like crazy. and I bruise easy. My husband didn't believe me when I told him it hurt when he poked me (he thought I was being over dramatic) so I had him poke me on my arm. The next morning I showed him my bruise.

My symptoms seem to be all over the place :/ thank you everyone for your responses.
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7734321 tn?1393759964
Can i ask why you made the decision not to take the blood pressure medications for your headaches and ignored this for a year?
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7734321 tn?1393759964
I'de also be asking the same questions rumpled asked you above !!!

I can tell you..... I didnt have an adenoma... I had a Bulky ( Enlarged ) pituitary gland. During surgery it was discovered i had an over abundance and Increased size of the ACTH cells in the gland.

I typically am not a headachy person, and any headaches i do have seem to be Blood pressure related. I get very sore eyes cos i just cant seem to focus. i dont get double vision, but definately blurred vision, this makes me strain to see and i sometimes get headaches from straining.

Something is making your Pit gland enlarged !!!! If it were me, ide want to know what ! why ? Never ever just let something grow !!!! Thats stupid.

I know people who just let things grow and they are no longer here to tell the story ! ( not trying to scare you, but...you need to be pro active )

And doctors who just want to let things grow...need to have their licence revoked !!!!

For you its incredibly important you get them to conduct ALL pituitary hormone tests....every single one !. And get a copy of your results.

Remember i had no tumor...but i have cushings....you dont need a tumor.
There are so many conditions that can come of having a bulky pituitary gland.

I tend to think the headaches may not be related though, unless you also have high blood pressure and major vision changes.
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Avatar universal
When they did the dye, did they pull you out, or do it when you were in the tube? If the latter, it was a proper pituitary MRI. If they pulled you out... it was a regular MRI.

Are the tests 8am fasting? Is the lab spinning the ACTH immediately? Is the tube chilled? Do you keep the jugs for urine tests cold at all times? Lab error, handling errors, timing errors can all make for testing to not come out correctly.

Dostinex will only work on certain types of tumors... so it is not something that will work on all of them. You need an expert doctor.

Did you get a copy of your tests?
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Avatar universal
He tested other things too, but everything came back normal. I'm not exactly sure what the MRI is called, but they stuck a needle in me before it began and administered the dye in the middle if the MRI. Radiologist said there was no sign of a tumor.

I've read up almost every post on this forum but no one seems to have what I'm having. Most have something that points to what is causing it, but Everything is coming back normal for me, but my pituitary keeps growing. I've had headaches for years, but the doctor said that he doesn't think they are related. I took my first dose of Dostinex Saturday. I've been taking b12 shots for a month now and I don't feel any different. If anything, I feel more sluggish. I have a follow up with my doctor in October. Hopefully the meds will work :/

Thanks for your comments. Hope all is well with both of you and wish you the best in health.
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Avatar universal
Your doctor is what I call an *endummy*. You do have options other than to "let it grow" - you have the option to actually discover the type of lesion, which you should, and to get the lesion treated properly.

Did you get a dynamic pituitary MRI?

Prolactin only? That covers ONE type of pituitary tumor... and there are many others so that one test is not enough.

Find a pituitary center at a university center or larger hospital. Get a competent doctor. Someone who know. Get copies - even some neuro-endos are duds.
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