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Desperate for advise from someone who knows!
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Desperate for advise from someone who knows!

I was diagnosed with a 5mm pitituary tumor. I went to a nuero endo Monday and now she is doing blood work to test my hormones. My gyno told me that my prolactin was high but she said no and didn't agree. In 3 years I suffer with a debiliting headache Every day ,had an ablasion that tissue grew back from in two weeks which led to a hysterectomy. Always had ovarian cysts that got worse in last few years. Now I am loaded with breast cysts all kinds are septated with rapid tissue growth . I am leaking as well. I have rare supra ventical tachsrdia in which my heart operates 44 percent of the day at a rate of 140 to 160 beats per minute. I also have tissue growth in the esophagus that was just biopsies as well. This doctor that I saw told me that she doesn't know if any of this is related. I can't see that bc no matter what hormone they gave me in the past or med for my heart my body rejected it. I am feeling hopeless. She told me the tumor isn't big enough to cause a headache though. Please help. I don't know what to do  
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596605_tn?1369950227
Hey-
I've seen your posts but I don't know how to answer :(

It's good that you went to the neuroendo as that is who you want to see for sure! The pit gland a bunch of hormones but it make makes two hormones FSH and LH which are related to fertility. And then high prolactin just muddies it all up.

Often what happens when a woman gets a pit tumor that is not behaving itself,  is that this women gets  irregular periods and then their endometrial lining builds up and wham...gyno probs. Prolactin causes breast leaking too.

Now all this other tissue growth that you mention  i dunno...

This heart thing that you mention is that new?  or is it something that you have had for a while?
What do you mean when you say "I can't see that bc no matter what hormone they gave me in the past or med for my heart my body rejected it"

Did they check your IGF-1 which is the indicator for growth hormone?

Also #1don't give up! and #2don't listen them when say that pit tumors don't cause headaches they certainly can. I have headaches and know of others who have them too!

Horselip
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657231_tn?1390151580
Totally agree with Horselip on the headache thing - it does not matter the size - they cause nasty nasty nasty headaches! We all get them and why only a few docs correlate the headaches to the tumor is beyond me!!!

I had two pit tumors - prolactinoma and Cushing's at the same time. I had heart issues with mine - nothing like yours though - irregular heart beat, tachy, POTS etc. unlike the usual high BP - so I know heart stuff happens with the Cushing's. The tissue growth I have not heard of either. The prolactin messed with my period my mind and it was a nightmare - what a PMS x10...

Did  you get a copy of your tests? Maybe you have to find another neuro-endo - sounds like you got a dud....
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Thanks for your reply. I was diagnosed with the heart problem in November of 2010. I get holtered every three months   The female problems began in jan of 09 and they tried progesterone in the form of pills and an insert to stop the bleeding. Nothing worked. The hysterectomy was in June of 2010. Nothing took my estrogen levels down. But the headache came first in 2008.
She is checking all hormones that pitituary produced. My prolactin is only a 14.3 and my gyno said although that is in range it's still not typical. My endo nuero said that prolactin isn't causing my glactorea.
My body seems to react weird to all meds. Either allergic or no change in symptoms The strongest headache pill does not even dent the pain. The beta blocker and half the lowest dosage put me into start of congestive heart failure. so everything is just wacky. And the tumor was recently diagnosed.
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596605_tn?1369950227
I feel so bad for you :(
In general pituitary tumors are fairly cut and dry. They are either secrete or don't. They effect certain hormones or don't. Once you get your hormonal tests back get a copy and post them. We can try to help you to interpret them.

There is one quirky thing that I've heard of re Prolactin where a lab dilution needs to be done because the levels are over a certain point. So then a mistake is made and the levels seem lower than they really are. I forget the name of it. But hopefully they recheck that too.

I've never heard of one affecting the heart like that, except maybe high growth hormone via a test called your IGF-1, initially. Your neuro endo better be checking for that, or run.

Also they should be checking your thyroid from top to bottom too! There is something called a TSH secreting adenoma that might cause cardiac issues too.

hmmm

I would ask your main doctor if it would ok if you get referred into pain management while you are still in a diagnostic stage?

That is something that has helped me to cope quite a bit. As there is nothing worse than having a headache for almost six years...Now I am able to bring to pain level down a lot with meds. I would not be here writing this, if it were not for these meds seriously.

Hugs

Horselip
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Avatar_f_tn
Yes she rechecking prolactin and added lh fsh cortisol atch and growth hormone. My ob checked tsh and t free 4 so she didn't repeat that. I've read that women who have prolactin tumors are overweight and can't lose weight. I'm the opposite- 90 lbs and can't keep it on. Is that true? I will seek pain management though like you said bc I am a divorced mom of 3 boys and functioning is hard.  
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Avatar_f_tn
Yes she rechecking prolactin and added lh fsh cortisol atch and growth hormone. My ob checked tsh and t free 4 so she didn't repeat that. I've read that women who have prolactin tumors are overweight and can't lose weight. I'm the opposite- 90 lbs and can't keep it on. Is that true? I will seek pain management though like you said bc I am a divorced mom of 3 boys and functioning is hard.  
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596605_tn?1369950227
The endo is checking the right stuff, so that's good. When will you get the results?  Have you always been on the thin side or is this a change?
Yes, high prolactin sometimes causes weight gain but not always. A growth hormone secreter or ACTH secreter could cause some of your symptoms.  
Good luck with pain management.
Horselip
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She told me hormones take about a week. So I'll expect her call in 2 weeks haha!  I had the bloodwork wednesday. Thank you so much for your communication. I have always been thin around 110. But not 90 lbs.
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657231_tn?1390151580
Low cortisol - low ACTH causes weight loss and heart issues may come with that one due to the issues with sodium and potassium. Even if your tumor is not a secreter, it could be interfering with the secretion of other hormones and messing up other things. My tumor twin and another person I know routinely lost K and no reason was found - they would pass out. Some of us are really bizarre with medications too.
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Back in February she tested me for a pheo On my adrenal glands bc of the heart and the weight loss. She injected me with cortisol and bc of my heart issue she had to do it in the hospital bc she said that cortisol injection raises your heart rate.  The ironic thing was that when they injected me with it my heart went from 125 Bpm down to 82. The doctor and the nurses were shocked at the opposite reaction. It was strange. But when when my tests came back negative for pheo I was basically dismissed.
I'm waiting for these blood tests and hope I have an answer.
Does a good dr realize that it can interfere with hormones even if it's a non secteter?
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657231_tn?1390151580
Pheos and other tumors can secrete on cycles - so you may not have been high at the time. One test is not good enough - for ANY hormonal tumor. Get a copy of your tests - find another doctor please.

I have not heard of giving cortisol to raise a heart rate. It can but gee! I had high cortisol and a LOW BP so it does not have to happen - what can happen (per my cardiologist) is that your body cannot manage the change in fluid dynamics from the cortisol changes, and the BP drops.

The pituitary lesion is up there doing something - you have symptoms - you need the right neuro-endo to get to the bottom of it. It may take a few docs to find the right one!

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596605_tn?1369950227
Yes- a good neuro endo should also know that a non-secreter can affect your hormones. My Rathke's cleft cyst was already affecting my thyroid, female hormones and growth hormone, before it was removed.

So yes!!! A non-secreter can make certain pituitary hormones ones lower.

Rumpled brought up a very good point about cortisol. If it is low that could be behind the weight loss.  

I now have low cortisol because my pit gland does not work anymore. If I don't take my hydrocortisone pills I get very tired, have no appetite and my blood pressure goes low. Never given any thought to how it affect the heart rate though. My pressure always goes up right after I take my meds.

Throwing out a theory...maybe when they did that cortisol injection you were low in your levels of cortisol....and the injection restored you to homeostasis? Cause 82 is a healthy good rate while 125 is kind of high?

I don't know anything about pheos but it makes sense that they could be pulsitile in nature and require more than one test to catch!

Horselip
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So I had a terrible day. The doctor called me and said my hormones were normal and to come back in a year!!!!!!!!!!! I told her that I consulted with a neuro radiologist thanks to a dear friend that runs a center in NYC and he said that this tumor is doing something or else I wouldn't be a lactating! And asked her the possiblily about a non secretory tumor causing this. She told me no!  So now my friend is getting me in with a good doc in NYC. I can't believe that a doctor would look at a  a patient with  a heart condition, pancreatic metaplasia, a briad 3 Mamogram (mammogram) with 27 complex septated cysts that is leaking milk, female issues that let me to have a single ovary left after 3 surgeries, elevated on and off glucose levels, and a 4 year headache , then find a tumor in my pit and say its not the cause !  I've been a mental mess all day but seeing your feedback helps me know I'm not an insane hypochondriac.  
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So I had a terrible day. The doctor called me and said my hormones were normal and to come back in a year!!!!!!!!!!! I told her that I consulted with a neuro radiologist thanks to a dear friend that runs a center in NYC and he said that this tumor is doing something or else I wouldn't be a lactating! And asked her the possiblily about a non secretory tumor causing this. She told me no!  So now my friend is getting me in with a good doc in NYC. I can't believe that a doctor would look at a  a patient with  a heart condition, pancreatic metaplasia, a briad 3 Mamogram (mammogram) with 27 complex septated cysts that is leaking milk, female issues that let me to have a single ovary left after 3 surgeries, elevated on and off glucose levels, and a 4 year headache , then find a tumor in my pit and say its not the cause !  I've been a mental mess all day but seeing your feedback helps me know I'm not an insane hypochondriac.  
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Avatar_f_tn
The injection of cortosol was to see my body's response to how it processes it.  But bc my hr was so abnormally high they had to be careful bc the injection causes it to go higher. Mine normalized.
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596605_tn?1369950227
Oh geez that *****

Get copies of those labs. And look at them yourself. Esp the ones that we've pointed out to you. You might be on the edge of the reference range or even off. You've got to just see them for yourself before you come to any conclusions.

Regardless, this doctor is not the right match as you've figured out. Check her off the list and move on. Make a voodoo doll and put her picture on it first and burn it, if that makes you feel better :)

Your situation sounds very complex with everything that is going on. This pit tumor may not be "the answer" to all of your woes. But I know there are endos who say headaches can't be caused by pit tumors.....luckily mine is not on that side of the fence.

You are clearly not processing hormones properly. What the answer is? I don't know. But the way that you handled that cortisol shot above is not "normal"

Glad that your friend is helping you,  this is good!!

I don't know what pancreatic metaplasia is but blood glucose probs might be associated with that it could also be a clue as to why you did well on that shot of cortisol?

Horselip
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657231_tn?1390151580
Get another doctor - a year when you are lactating (as may not know, it can be other hormonal issues from thyroid on up that can cause it) so you need to at least get to the bottom on that - it is super painful. Been there, done that.

I also have not heard of some of the things you have - but when you are that complex, you need another doc. I know I was out of the box too - and it took me a while to find the right set of docs.
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Avatar_f_tn
These are my labs
IGF- 1    210 ng/ml.        
Growth hormone serum
2.5.                                  
LH
14.0
FSH
4.6
Prolactin
22.2

Confusing to me bc they give u all these phases for the lh and FSH. Also my prolactin was 14.3 the last test so it went up definitely. I don't see the cortosol on here though?

                                          
                                
              
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596605_tn?1369950227
The Sex hormone ranges depend on what stage of your cycle you are in. I don't think you even cycle??? so don't know how to interpret given that.

The IGF looks ok, so you are probably not running high on that one. I was more worried that one might be high for you...because of the "growths"

The ones that I am more curious about now, are your thyroid labs and cortisol as they "could" be more linked to the symptoms that you have.

Move on, get another doc.
Sending a virtual hug
Horselip
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Ok guys so- I went today to my ob because he wanted to tell me to get a different endo. He read her report and consulted with a  reproductive endo and my hormones are not normal at all. My FSH and LH are high and being that other numbers indicate that I don't ovulate at all, absolutely no ovulation taking place in the one ovary I have its clear to see these hormones ate abnormal .  My TSH and my t free 4 were abnormal and my sugar is high. SO now today I was diagnosed with poly cystic ovarian syndrome with no uterus and one ovary that doesn't ovulate therefore he said this tumor is a secreting tumor and he said my prolactin was taken when I was on bromocriptine and the numbers still went up 6 points . Sooo in the meantime I got a phone call from my friend that has been helping me and I'm going into Cornell Wiell in NYC tomorrow ! Apparently I am a very interesting case - I'm going to see her take on my case and I'm also going to see this reproductive endo that my ob consulted with. He too told my ob this case is very interesting and he would like to take me on as a patient. I figured it can't hurt.  We r still trying to locate my cortisol  blood work nc he didn't get that copy either. I know it was ordered. Oh and the pancreatic metaplasia plays into the hormones too.
Thanks for all the support
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Avatar_f_tn
Ok guys so- I went today to my ob because he wanted to tell me to get a different endo. He read her report and consulted with a  reproductive endo and my hormones are not normal at all. My FSH and LH are high and being that other numbers indicate that I don't ovulate at all, absolutely no ovulation taking place in the one ovary I have its clear to see these hormones ate abnormal .  My TSH and my t free 4 were abnormal and my sugar is high. SO now today I was diagnosed with poly cystic ovarian syndrome with no uterus and one ovary that doesn't ovulate therefore he said this tumor is a secreting tumor and he said my prolactin was taken when I was on bromocriptine and the numbers still went up 6 points . Sooo in the meantime I got a phone call from my friend that has been helping me and I'm going into Cornell Wiell in NYC tomorrow ! Apparently I am a very interesting case - I'm going to see her take on my case and I'm also going to see this reproductive endo that my ob consulted with. He too told my ob this case is very interesting and he would like to take me on as a patient. I figured it can't hurt.  We r still trying to locate my cortisol  blood work nc he didn't get that copy either. I know it was ordered. Oh and the pancreatic metaplasia plays into the hormones too.
Thanks for all the support
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657231_tn?1390151580
I had the PCOS and Cushing's and prolactinoma combo... it was ... not nice...

I hope the doctor can help you.
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596605_tn?1369950227
Oh good, it sounds like you have some docs on your side and support from a dear friend. That is great.

I didn't know that you were on bromo. so yes, that would push the prolactin down more. Combine that with the low Thyroid and sex hormones and you might very well be hypopit from this cyst/adenoma thing.

Sounds like you have regrouped and set up another plan. Excellent. Nice to have some docs on your side. And to be told that you are "interesting" to boot, what a compliment :)
Horselip
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Went to Cornell yesterday. They confirmed that this tumor is not the cause of this. How she explained it made sense. They are still not giving up though like the other doc. They are testing me for a disease called men-1. Especially bc of the pancreatic metaplasia. They think that this tumor is a secondary  growth  just like the others.

Not sure how to take this but at least they are trying.
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Men-1 is a genetic disorder - so they should run a DNA test. BTW there are many different types of MEN (I call mine MEN-JEN as a joke - I don't have MEN but I have a lot of tumors and my name is Jennifer) and sub-types so even if you test negative, you may have another type or sub-type and the test is expensive so they may not want to cover all the testing.

Even if it is *secondary growth*, it still should be treated and you have to look at family members for others with similar issues. Any parathyroid or calcium issues?

I would still think though... even though it is MEN - that the pituitary is causing the issues... strange!
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Avatar_f_tn
Hi guys havent been on in a while bc I'm still in this diagnosis process. Good news is that I have two great drs. One endo and one reproductive endo. My tests for these rare endo diseases are not all back yet but my CBC  was not sO great   I had low red cell count and high white cells , potassium was low sodium was low and calcium was elevated. Had an ultrasound  of ovary and ovary has failed but has alot of cysts. He was looking for a specific tumor that secrets lh bc of my lh level and FSH. I have the reversal so clinically I have pcos but not really as u all know what these tumors can say. Theory was that possibly have big big prolactin issue but shot down bc a prolactin tumor doesn't do the rest of this stuff. So now I'm waiting for rest of results and going for a MRI of my abdomen to look for tumors or hyperplasia on pancreas or ovary.  I'm also doing a 24 hr urine catch to check cushings syndrome which differed from cushings disease or something like that ?  Breast discharge is very mucosy rather than milky so that's another concern the doc in ny has. She is now gearing toward this lh glycoprotein tumor pending the test of these rare disease tests and mri So  I'm still in the rule out process.  
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657231_tn?1390151580
One can be rather complex... I had PCOS and lot of female issues with my pituitary issues, and it made my hormonal panels come up stranger than my other pituitary buddies.

Re Cushing's syndrome vs disease - the *overall* is called syndrome no matter the source, and disease is reserved, or should be, for only pituitary sourced hypercortisolism. So a 24 hour urine test will tell the doctor that high cortisol is present, but will not give an indication of source. Source testing should also be done - that can be ACTH, adrenal testing, dex suppression (which is a good source test, not a good exclusion test), and of course imaging - and none of the tests are perfect...

I never had kids, but from my own lacation, I know the milk can differ in color and texture (ewwwww!) so.... not sure why that can knock out a prolactinoma, but they tried that with me too and they were wrong - but it took 12 years to prove it...

All the testing is no fun anyway.... keep at it.
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596605_tn?1369950227
Thanks for the update. You've come a long way in just this last month.
It sounds like you have decent doctors now and that is key! Keep plowing forward and keep your head up. Being undaignosed is the worst part i think. You are truly a medical mystery. Someone should do a TV show about your case so you can make some big bucks ha ha
Sending you a virtual hug from Hawaii-
Horselip
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Hi All. It's been a while and now  they are testing me for ovarian cancer. The multiple cysts that were found on my ovaries now have tumor markers. My breasts ate still making cysts and septations and milk. I'm still losing weight 87 lbs now. They are saying this pit tumor is not doing this. My reproductive endo thought I had a big big prolactin tumor which was why he put me on calborgene but there was no change and It made me very sick. So now they are saying non secreting tumor that isn't doing this stuff at all. My gi doc sent me for an MRI of my abdomen yesterday to check for other causes of the nausea no appetite and weight loss. I had extensive blood tests and some pancreatic issues showed up indicating function of the organ itself. Anything any thoughts at all?
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In terms of the pit gland they might be right? It.s good that u r getting this other scan. Hopefully it will shed some light on what is happening. A good friend of mine just had a ruptured cyst along with tumor markers too. She is still in a diagnostic stage for this but her docs are saying the cyst is the cause.
the pancreas makes hormones that you need to process food. sometimes those enzymes and such can be replaced.  Has ur doc connected the pancreas to ur low weight?
sending a hug
horselip
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657231_tn?1390151580
I find it just a little weird that they think the pituitary is not related when a lot of your symptoms still seem... pituitary... plus MEN-x is a endocrine aka pituitary disease so... that kinda baffles me a bit.

There are other forums here for some cancers which you may have to branch out to as I don't know if we can help cover all your concerns - but we do want you to keep us updated on what is going on with your ovaries etc. It is very worrying that you have lost so much weight and they have not pinpointed the cause of the issues. Please take care.
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Hi guys
It's been a while since I've been on. Well, I had this tumor removed on April 9! My health was severely declining and I reached out to a top surgeon in NYC mt sinei. I emailed him my history and Within two hours I was at his office. He was appalled that no one referred me to a surgeon and after looking at my original MRI from 4 years ago that was supposedly negative, the tumor was there the entire time, it was not only 6 months old. He saw shadowing fluid and the tumor was much larger than the report said. In 3 days I was in getting this out! When I woke up I had no headache at all! ( alot of pain in my face and I looked like I was hit by a bus) but no headache! I ended up having a rare tumor and it took a lot of pathology to figure out what it was. It was rock hard and had a weird pattern. Post surgery he questioned whether it was an adenoma at all. It was posterior and connected to the menengies and difficult to remove. But it's gone and I'm a new girl! It ended up staining positive for for gh and prolactin as well. It had 3 points of hemmorage which did damage my pit gland. But I'm dealing with that fine. Cortisone and steroids are next.

I'm also now in a study for this in Columbia medical in NYC   The doctor is amazing.
If anyone is as desperate as I was , I reccomend highly. Dr Post is my angel.
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657231_tn?1390151580
I am so glad that you were persistent! I know a lot of people that had supposedly normal scans and when a surgeon read them the doc found a tumor.

I hope the hydrocortisone is temporary as your pituitary recovers - it is standard after the surgery. Sorry - but the wean is not fun. You may have to be on other meds with pit damage. I am panhypopit so I replace a lot myself.
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I was on it after surgery and then off it. Now I need to go back on. Weight loss is too rapid she said. I did great on it but coming off was not fun. I still lactated post surgey for about a month but now nothing at all. I'm a happy girl.
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You should have to go on it for the tests, not for weight reasons... that is a bit odd to me. Are your tests showing you are low? Did you have a stim test?

Yeah, weaning was the worst!!!
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Yes had different tests done in Columbia. Last two were low.
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657231_tn?1390151580
Oh well then... I hope you don't gain a bunch of weight back (unless you need to of course).
They should at some point do a stim test to make sure your adrenals are up to snuff when you wean off next time.
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Avatar_m_tn
You know your body best so don't let doctor's tell you different.  I also have a pituitary tumor was diagnosed about 10 years ago.  Since day one I have told my endocrinologist that I have severe headaches daily that can get so intense that I can't even function, I just lay in bed crying.  I was told that a pituitary tumor doesn't cause headaches, but within a 6 months of treatment my headaches mellowed to every 3-4 days and the migraines were only about one a month instead of weekly.  Still to this day he looks at me like I am making it up when I mention my headaches, but every time he tries to decrease my meds or I don't take them for a week waiting for a paycheck my headaches increase, and my labs show an increase in prolactin levels.  Over the years I have been able to find a good balance with the right meds, good eating habits and regular exercise and now I only have a headaches every couple of months and they rarely hit a debilitating intensity anymore.
I also have PCOS, and recently at an eye exam learned that there is a cyst on the back side of my eye.  I don't think any of this is coincidence.  I haven't been able to find the link to the eye yet, but the PCOS makes sense because it is caused by your hormone going haywire and when your prolactin is up to 1400 you are bound to affect all hormones downstream...which is all of them by the way.  
I had a terrible time with all the medications that the doctor tried at first, Metformin made me throw up all day, I couldn't eat for a week before I decided to switch it up.  Then he tried a second option, I forgot the name but I saw no result, my prolactin actually increased during that month.  Finally he put me on my current medication, Dostinex (Cabergoline), I had to start with half a pill once a week and work up to a full pill twice a week because when I tried to take the full dose right out of the gate the world started spinning. I couldn't walk a straight line and when I stopped moving it felt like I was on a boat and I had to hold on to things to keep from falling over.  Once I got to the full dose after a long process of baby steps my headaches got much better and my mood and emotional stability was drastically improved.
I guess my point is everyone will react differently to different medications, but don't accept that you have to take one that doesn't work for you, do your research and take part in your treatment.  It may annoy your doctor a bit, but you have to make sure you are getting the best treatment for YOU.  If your body outright rejects it then demand another option, if you just have some weird side affects like the room spinning then try a lower dose and work up as your body let you.  Listen to your body, it really is the best judge, if you stress your system trying to make a med work that just isn't right, it only puts added stress on your system making you feel worse.  
I know it can be a long, frustrating path to better health, but when you feel like yourself again all that stress seems well worth it.  Best of luck in your quest to a healthier you.
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Yes this has been very frustrating. Don't know if you read rest of my posts but I had my tumor removed in April. Headache gone instantly! I had a rare tumor and it was more the location and that it attached to meninges and had 4 points of hemmorage that caused my headache. My pit is damaged now so I'm watched closely thank god. But I'm so greatful. I see a pit doctor and a surgeon. Endos haven't been very helpful to me. Did u see a surgeon?
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Did your doctor run other tests other than prolactin? Are you aware that you need to be on that medication probably for the rest of your life?

You probably need a pituitary MRI to see the size of the tumor to make sure all is well - and thyroid tests to make sure the source is pituitary and not another reason (prolactin can be raised for many reasons).

You may want to consult a neuro-endo at a pituitary center. That way you can get a full set of testing, a proper dynamic MRI and monitoring like you need.

There may also be some other treatment options.
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HI my name is rhonda,I have been diagnosed with  the micro tumor,was 5mm last checked,I go to MRI for the  2nd time for them to do test with and without contrast,to see if it has changed.I have problems w 3 different types migraine,vision blurring,Dark green  secretions in breast,seizures,no energy,spend 5-6 days in bed out of 7> my physician finally linked all these through testing some things then referring me to endo doc., I have had 6 years of  thyroid showing up hyper,hypo and normal.When i first went to endo,they said hyper thyroid,(but i had had significant weight gain)  she gave me a script and before i could fill it  she calls says STOP those meds,test showed up normal. That she believes it to be thyroiditis.I was told they wanted me to have 2nd mri done 6 monts after that appointment its been 8 monts.In this time i have been going through more and more severe headaches,that knock me unconscious,and seizures worsening,with added twist of  me screaming at top of lungs in process of seizing.Vision worsening,everything worse. I went to endo doc,her pa told me they would test me on prolactin again,and thyroid,again thyroid normal,They were supposed to make me an appointment with a neuro-surgeon. Today i get letter saying that my test was normal and make an appointment in next couple months to discuss tumor. This note was sent before 2nd  mri comparisons,no mention of the appointment of the neuro surgeon In mean time i have not been on any meds for thyroid,or tumor,nothing.. I have had to go get shots to knock me out and try sleep through worse pains.I just want it out.I can feel that its pushing on optical nerves,not to mention sinuses.My physician has put me on higher  pain meds,(She said wanted me comfortable till i got that neuro surgeon  visit)that keep me knocked out and looney headed,. Im completely debilitated,and endo doc says tumor is not responsible for headaches,seizures,no sleep,shaky hands,weight unstable.vision  blurriness,and that tumor is to small to be removed. I call ******** on her theories. They've said is secreting prolactin,is causing (thyroid storms) and fatigue.I have researched  everything i can find,on this and every symptom i have is listed. I dont understand  why she will not do anything for me. I am at end of what i can endure with this,this is no life,it just marking time.Do they think the things are gonna shrink and clear up on their own,?..I look sick,sking scaly looking,hair coming out,problems w teeth,Hell problems with every thing,Down to not being able  to urinate because of the secretions. What do i get? A note saying thyroid normal this time  again,check in with us in couple months to discuss the tumor. I mean really WTH? Do i just lay here in bed waiting for an anuerism,or worse.? How can i get this arrogant doc to listen to me.Or how do i bypass her to get an appointment w a neuro-surgeon? When they told me 5 days ago that would make appt with the surgeon,i acually cried in office with relief that finally something was gonna start moving.Then i get note and now i have no clue if the're setting up a neuro surgeon,waiting for 2nd  MRI's  or why i should make an appointment to go back to endo to discuss tumor in couple months. This is sucking me dry on hope,or ever seeing any relief in sight. When its at it worse, if id had gun i would have cheerfully blown my brains out just to get the pain to stop. Have any of you had these things happen? Any advice at all? Or someone whose been given run around like this.
How do i get them to take it out? Wits end here people.
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Is your doctor a neuro-endo at a pituitary center? If not, find one. If yes, find another.

You also need to find a super duper experienced surgeon.

Your current doc - as a pit patient myself I can tell you that pit tumors DO cause headaches, insomnia, thyroid issues and a whole host of issues that seem very unrelated but are related only to the tumor. So your doctor does not seem to be up on the latest with pituitary tumors.

I hope you have copies of all your tests so you can easily shop for another doctor. It is horrid that we are forced to look for care when we least have the energy for it, but that is the fate we have. I do hope you find the right doctor for you. It took me a long time - but it paid off.
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