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Old 01-14-2007, 11:08 AM   #1
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Pituitary tumor

Hi everyone,

I don't know if this is the right board to be on but I just got diagnosed with a pituitary tumor.

Didn't really know anything about this tiny shaped thing in the middle of my head but turns out it controls every hormone in your body among other things...

I am 38 yrs. old...female...

My first symptoms were breast discharge (from both)....NOT pregnant nor sexually active right now...

Then I had my periods coming every two weeks...very heavy....and then it actually stopped in Dec....Again....not pregnant nor any chance of that right now except immaculate conception...HA HA HA...

Anyway....then the symptoms kept coming.....hot flashes.....and then developed what they call diabetes insipidus.....where I have extrememly low blood sugar.

The good part is that I am already on Cymbalta for nerve pain as I just had my 3rd major neck surgery for failed fusions in December.... but Cymbalta is used as an anti-depressant also and these tumors usually cause mood swings but haven't had any being on this medicine...So that is a blessing....

They tested my prolactin and it was exhorbanently high....but higher than normal.....

I haven't had an MRI yet to determine how big the tumor is and what "kind" it is.....There are about 20 plus types of pituitary tumors....

I've also gained about 15 pounds....I am 5'5 and have been around 115 pounds since high school so this is unusual for me to gain weight without any change in eating habits....

Does anyone have any experience with this type of tumor???? Or know any suggestions for what to do to help with the symptoms for now????

The low blood sugar has been awful and keeps me from driving at times as I feel so shakey and feel faint so want to be safe and don't get behind the wheel.....I think the normal should be between 90-140....and mine is as low as 50 most of the time...Even when I eat a healthy meal....it is only to th 70's....I am staying away from refined sugars and carbs....and eating only good sugars....

Any help would be greatly appreciated......I truly hope I don't have to have another surgery.....this last one was my 3rd in 2 years......it also says that long term medicine and radiation are warranted most times for this tumor....

Thanks so much for "listening".....I am praying for others on this board that are having their own health issues....

Ingrid

 
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Old 01-15-2007, 06:52 AM   #2
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Re: Pituitary tumor

Hi Ingrid.

I have a pit tumor and I am still in the process of dealing with. I have been sick since 2003 and my tumor was found in 2005. Mine is secreting ACTH which is hard to diagnose.

I will tell you some things that I have learned in my "process", they are probably quite jaded though.

MRIs should be done with and with out contrast. You should try to get them to do a dynamic MRI, which helps show the tumor better because of slicing and other things I dont understand...
MRIs are not 100% positive. I have had 2 done in a 3 week span and had 3 different radiologists read them and have 3 different reports(meaning sizes and locations and kinds). I have heard many stories of people who have been told they do not have tumors and then when they have surgery they end up having large or multiple tumors. I do not believe that they can tell what kind of tumor it is by imaging.

I am confused when you say you have diabetes insipidus which is related to water. You mentioned low blood sugar a few times, do you mean to say that you are hypoglycemic?

Have they checked all of your pituitary function hormone levels?

I would highly recommend getting copies of all of your test results. Many(most) docs do not understand the pituitary and you might want to keep an eye on the levels yourself. It is also good to have for comparing later.

If you have a strictly prolactin secreting tumors( can be more than one type), I understand that many people get help by medication. It supposed to shrink the tumor. I believe that most things published on prolactinomas dont talk about many other symptoms other than lactation. But, I have heard from others with prolactinomas that they have many other symptoms. So, I would think you might have a big chance of taking the meds and getting relief if it is just a prolactinoma.

These hormones control just about every movemnet in our bodies and they need to be balanced. You did mention that you have had 2 recent surgeries? Were they from anything that can be related to any of this? Example, I have HUGE kidney stones in chambers of kidney...found out can be related to ACTH tumors.

I went to many docs locally and even out of state with no help. I eventually went to a pituitary specialist (are not many even though they call themselves this) and I would have saved time and money and gone to him first. Hopefully you will not need to do this and you can get help locally. But, if you are not feeling better soon and you are not getting answers please dont waste time.

I hope this helped a little????

 
Old 01-15-2007, 08:06 AM   #3
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Re: Pituitary tumor

Hi there,

Thank you so much for giving me your honest thoughts and what has been happening with you....I need to hear the good, bad, and the ugly and like you said....hopefully learn from someone who has gone through this...

And ooppss...I did type in the wrong thing.....yes...I have frequent urination...the diabetes insipidus...but I allso have really low blood sugar...hypoglycemia....

These have all come on very suddlenly over the last few months when I had no issues with hormone levels, blood sugar, etc....before....

My other surgeries and the 2 most recent ones in the past year were for failed neck fusions.....So....I don't think there should be any correlation but you never know....

Right now they have only tested my prolactin level and that was from my ob/gyn....I am heading to an Endocrinologist in the next weeks...

The other person I know with this kind of tumor went to UVA in Charlottsville VA to a specialist and has actually had 2 surgeries.....

So...I don't think my insurance would allow me to go straight there without seeing someone in the plan here first and then maybe getting a refferal...

Your post was VERY helpful to me and helps me know what to look out for if they are just hemming and hawing on things or the plan on what to do...

Again, the part I am most worried about is that the longer this goes on...if there is a chance the "menopause" symptoms could be permanent and cause infertility.....

May I ask what specific symptoms made you start going to the Dr. at first????

I have so many strange one's that I didn't think twice about and now read onnline that it is from this....

Have they determined which kind of tumor you have yet???

Also, do mind sharing what your treatment has been???? Medicine, radiation, surgery????

After everything that I have gone through with my neck surgeries which this last one was 5 hours and they cut both the front and the back of my neck so has been a long, slow recovery.....I am not afraid of another surgery if that is needed but just want to get on with it and get my life back again...

The low blood sugar is hard to deal with since it comes on so suddenly sometimes.....I am trying to eat 6 small meals a day with the "good" sugars to keep it at a steady level but ever after I eat sometimes I start to sweat, feel shakey, and faint and then when I test my sugar it's around the 50's....
I bought some Glucose tablets to keep with me for this reason since it's kind of scary when I'm driving....

Anyway....sorry for rambling.....thank you SO very much for writing back and telling your story......it really helps!!!!!

blessings,
Ingrid

 
Old 01-15-2007, 10:17 AM   #4
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cherylr819 HB User
Re: Pituitary tumor

Hi Ingrid,

I won't be much help but I was just diagnosed today with a pituitary tumor also

I had a bunch of lab work done..because I am starting to try to get pregnant. My Prolactin was 37...not very high. What was yours?

I had an MRI last week and I was just really shocked to get the call today. I did not think I had one because I didn't really have any of the symptoms..breast discharge, irregular periods... I do have hypoglycemia though.

I can't get into my dr until next week. I thought they could only diagnose it through MRI? When are you having that done?

I do know that they are mostly benign. I read an article saying that up to 25% of people have them but do not know it...they find them on autopsy. And women are a lot more likely to get them. I am 35.

Do you have children or do you want them? I know that there are a lot of medications out there to bring the Prolactin level down so that you can get pregnant.

I wish you the best of luck and keep us updated!!!

Cheryl

 
Old 02-05-2007, 10:29 PM   #5
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MsDubb HB User
Re: Pituitary tumor

Hi! Maybe this will make you feel better. I had surgery for a pit. tumor almost 24 years ago. They couldn't get all of mine out, but what was left has disappeared after all these years. Anyway, I do fine as long as I take the replacement hormones (syntroid, cortisone, estrogen).
I also have diabetes insipidus. I hate that, but it can be controlled with DDAVP.
A few years ago I had elevated prolatin levels which scared me to death, but after an MRI it was determined that I didn't have another tumor.
So many advancements have been made since my surgery.
Good luck to the both of you!

 
Old 02-23-2007, 06:14 PM   #6
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Re: Pituitary tumor

what are the symptoms of a pituitary tumor. many years ago when i was on a psychiatric med i developed breast discharge, but when i stopped that med it went away. i do get missed periods. havent gotten mine in 4 months. back 3years ago my periods were real messed up got them every two weeks than didnt get them for 5 months, than when i did i was bleeding gor 2 months straight and needed a blood tranfusion. can somebody tell me if i have a tumor?

 
Old 03-07-2007, 07:29 AM   #7
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Re: Pituitary tumor

bump-symptoms for pit tumor?

 
Old 03-09-2007, 04:47 AM   #8
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Re: Pituitary tumor

A couple of years ago I wasn't getting my periods. I was always very regular and then they were getting delayed and eventually just stopped. I was 39 at the time. Gyn didn't think it was menopause. Sent me for blood work and prolactin level was 50. Did MRI and they "think" there is something there but weren't really sure. But based on how I was presenting...they went with very small adenoma of the pituitary gland. Sent me to endo. and he put me on Dostinex. I went from not getting my period for almost a whole year, to getting it two weeks after I started the Dostinex. It has been a year since I have been on the medicine and my period comes every 27 to 28 days.

 
Old 05-09-2007, 05:31 AM   #9
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Re: Pituitary tumor

Hello there everyone who has "pit" issues!
I had a 3cm macoademoma pituitary tumor (benign) transnoidiallly (nose) removed in June 05....the surgery went well, and unfortunately they wern't able to get it all out, because of where it's located near the brain stem and optic nerve and all. Now here in Feb.07 it's back! I am now undergoing radiation trements every day for 5 weeks, and I hope that this takes care of the tumor!! I want to know if there's anybody out there that has had the same thing happen? And no, mine is not the type that can be treated with drugs. The radioligist wants to do an MRI in 6 months, then every year. I'm concerned because the darn thing grew back so quickly, I really think an MRI is warented sooner for a baseline and then another in six months and then another every year! I want you to know that you must be your own advocate for your own health. Thanks for any feedback!

 
Old 06-20-2007, 06:21 PM   #10
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Re: Pituitary tumor

I hope my story helps someone else.

I was diagnosed with a prolactin-secreting pituitary tumor (prolactinoma) in 1997. At the time, I was having unusual headaches so I had a co-worker to do an MRI which revealed a tumor in the pituitary gland. I was shocked and scared and since I worked in the medical field directly with a radiologist, he immediately referred me to a neurosurgeon. The neurosurgeon sent me instead to an endocrinologist to try and treat the tumor instead of immediately doing surgery.
I am by no means an expert but I have had enough personal experience to speculate. No one knows what causes pituitary tumors to grow but I find it odd that before my diagnosis, I had just given birth to my second child. I learned that during pregnancy, the pituitary gland swells 2-3 times it's normal size. HMMM.
Within several months, my menstrual cycle stopped completely and with the exception of a few short intervals of taking medication to prompt it to start, it has never returned. The endocrinologist put me on parlodel which I could not tolerate even though I tried for years as well as synthroid for also newly diagnosed hypothyroidism. This is about the time my whole body went kaput and chronic fatigue (not diagnosed but I am not stupid) set in. I also started having breast secretions, breast pain, neuropathy in both legs, hair loss, you name it. For years, every doctor's appointment I had, I was asked how I feel and each time I would usually reply with "I am so tired". But my labs would come back normal and I would be dismissed and told to come back in 6 months.
Last year, sick of being told that I am "normal", I pushed my endocrinologist to send me to a neurosurgeon for surgical removal of the tumor. He was fit to be tied. He didn't want to do it but finally agreed so in June '06, the tumor was removed. I almost wish I hadn't pushed for it. I ended up with a CSF leak which corrected itself within a few days, then got sent home only to end up back in the hospital the next day with meningitis.
I stayed in the hospital a total of 14 days and went home with an intravenous pic line for daily antibiotics and steroids which I had to administer for two weeks at home. It really took months for me to get back to feeling right again.
I started to physically feel better and took a full-time job in Dec '06. By February, I realized that I actually had energy again and could come home and play outside with my kids. I wanted to do things and didn't want to sit around the house all the time. I felt GOOD again. I knew this was the way I was supposed to feel. My hair started growing back in the temple area. I was singing when I got up in the mornings for crying out loud!
One of the Internal Medicine doctors that I work for agreed to treat me so that I wouldn't have to drive so far to the endocrinologist which I had already made up my mind that I wasn't going back to anyway. He did labwork which showed a TSH level suppressed more than the "normal" range and lowered my synthroid dosage. My body fell apart again. I had just started to feel like a normal person again after 10 years and that feeling was yanked away from me nearly as fast as I got it. I went back to him and tried to explain how bad the change in medication made me feel but he wouldn't hear it because the labwork was now "normal". He also tried to push anti-depressants on me which I refused. I feel like crap, who wouldn't be depressed?
I have been researching, reading, and relating my symptoms on the internet, through books and through a new doctor. I am truly of the belief that hormone imbalance is to play and I will not stop until my hormones are completely in balance and I feel good again. After tons of research, I found an anti-aging doctor who is doing a complete hormone panel (24-hour urine is most accurate) and is going to put the hormones that are out of wack back in.
I just had an MRI done which revealed nothing more than scar tissue where the pituitary tumor used to be. My prolactin level is elevated (39) but I also read that could be related to chronic hypothyroidism which I have. At this point, I feel like the dirt on bottom of crap but I am extremely hopeful with this new doctor who actually listens to me. I will try to post again in a few months after my hormones are balanced to some degree.
Just a few things that may help someone else:

1. Pituitary tumors are seen on MRI's but are very difficult to see if they are small. (I am an MRI technologist, this is how I know) Although they are seen, they are "typed" by the symptoms. Contrast is used to surround the tumor to make it more visible on the scan.
2. Unless they are very large, pituitary tumors can be treated without surgery if the side effects of the medication can be tolerated. The medication used is Parlodel, a form of Bromocriptine which actually "shrinks" the tumor or makes it disappear altogether.
3. If you are considering surgery, I would recommend that you try the medication or if necessary, a gamma knife treatment which uses radiation to "kill" the tumor. Surgery should really be the last resort.
4. If you don't already have one, find a good anti-aging physician who will test all of your hormones, not just one or two and get your body completely balanced. Endocrinologists and most physicians in general will only treat you by laboratory ranges and are not really concerned with how you feel. Trust me, 10 years of living in physical H-E-HOCKYSTICKS says enough.


Kim

 
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Old 06-21-2007, 06:43 AM   #11
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rumpled HB User
Re: Pituitary tumor

I had a pit tumor discovered in 1992. It was discovered when I was lactating.
My prolactin was not especially high. I was not feeling well, tired and gaining weight. I started to get acne, get red and all sorts of other odd symptoms.
If you fast forward over the years, I had many MRIs, and few tests as the docs were following outdated theories that these types of tumors are not significant. Shame. For me that is. That tumor kept changing shape.
Finally I had a dynamic MRI in 2004 and it showed a tumor on the other side! I had two tumors, not just one.
Surgery revealed I had a prolactinoma and an ACTH secreting lesion.
I would suggest that you get tests to determine the type of tumor or tumors that you have and not rely on symptoms as that is not reliable enough. From all my reading and reseach, radiation is a last resort, not first, as it tends to destroy the pituitary itself and you end up in many cases hypopitutary or panhypopituatary and have to take many more hormones. With a skilled surgeon - emphasis on skilled - you have a gooi chance of doing very well. Bromos only work with prolactinomas. For Cushing's, acromelagy and other types of tumors, surgery and radiation are your only options right now.
I have had surgery and had my adrenals removed too. I take almost all hormones except DDAVP. Please do a lot of research. Even though these pit tumors may be tiny, they can be very pesky and some are dangerous. Size is not a factor here.

 
Old 08-21-2007, 05:16 PM   #12
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Re: Pituitary tumor

Smartkim,
Who is your anti aging Dr and where is he/she located?
Thanks

 
Old 10-19-2007, 12:13 PM   #13
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ltking68 HB User
Re: Pituitary tumor

Can I ask you what your symptoms were for your pit tumor and how it was discovered? I feel that I am having many of the same symptoms but in 2004 nothing was showing up on the MRI. Endo doc thought I was menopausal at age 36!!

 
Old 10-19-2007, 12:24 PM   #14
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Re: Pituitary tumor

silyquily.......Can I ask you what your symptoms were for your pit tumor and how it was discovered? I feel that I am having many of the same symptoms but in 2004 nothing was showing up on the MRI. Endo doc thought I was menopausal at age 36!!,

 
Old 11-08-2007, 02:39 PM   #15
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Re: Pituitary tumor

I've had a prolactinoma (pituitary tumor) since 1996. I've been taking bromocriptine all this time but the levels have been up and down. And the side effects are awful. Some months ago my dr. sent me to an endocrinologist who prescribed Dostinex. I've been taking it for a couple weeks and the levels have come down somewhat - from 160 to 106. I just need to continue with them some more. I was sent to a surgeon years ago, about 1999 who told me he wouldn't operate on me and that med would help. I'm just hoping this Dostinex will do the trick now. My periods are few and far between (not that I'm complaining )

 
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