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Pituitary Adenoma


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48 replies to this topic

#1 kimis

 
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Posted 30 April 2009 - 03:28 PM

Hi everyone. I just got the results back from my MRI of my pituitary adenoma. Back in June I was suffering from a major headache.....to make a long story short....I had a 3mm tumor on my pituitary gland. Strangely enough my Dr said my headaches were not from this tumor, and the tumor would most likely be gone in a year.

My MRI showed my tumor is now up to 7mm....and my PCP is sending me to a neurosurgeon. WTF!!!!!!!!!!!!!!

Anyone have and similar stories for me? Good or bad.......whatever you got!

Thanks......this sucks
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#2 kellylynn

 
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Posted 30 April 2009 - 05:11 PM

I did have a pituitary adenoma....about 2.5 mm, but it did go away about 9mos. later. I think it's a fairly common thing. So sorry that it's gotten larger! You may feel much better by having them go in and take it out. From what I remember reading the procedure is not as complicated or scary as neurosurgeon might sound.
Praying that all goes well!
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#3 RollingAlong

 
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Posted 05 May 2009 - 06:43 PM

The Pituitary Network Association is an excellent source of info
www.pituitary.org
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#4 kristenloeh

 
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Posted 09 March 2013 - 02:25 AM

So, how are things going with the tumor? Is it active? Have you started any hormone treatments and/or surgery? Just wondering because I was diagnosed with a 7mm pituitary tumor, and it is actively producing prolactin. I just started my hormone therapy to start hopefully shrinking the tumor and balancing out my prolactin levels. Hope all is well and that the docs did/are doing something to help get rid of the thing. They flippin suck. <3


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Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#5 Kamma

 
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Posted 09 March 2013 - 07:06 AM

I feel for you, kristenloeh.  I was diagnosed with a 9 mm craniopharyngioma on the pituitary growing towards my optic chiasma a few years.  It hasn't disrupted the pituitary yet and the last MRI showed no new growth. 

 

I hope the hormone therapy is working good for you. 


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#6 kristenloeh

 
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Posted 09 March 2013 - 08:54 AM

I feel for you, kristenloeh.  I was diagnosed with a 9 mm craniopharyngioma on the pituitary growing towards my optic chiasma a few years.  It hasn't disrupted the pituitary yet and the last MRI showed no new growth. 

 

I hope the hormone therapy is working good for you. 

 

Oh wow, I'm surprised they haven't done surgery to take yours out. It's only 1mm from being a macro AND going towards your optic chiasma. So, is it not active/producing extra hormones and that's why they haven't done anything about it?


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Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#7 Kamma

 
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Posted 09 March 2013 - 06:26 PM

It's a very slow growing tumour.  The only problems I had was some years ago when after weaning my son off the breast at six months, I continued to produce milk for six additional years.  The doctors then did testing but everything else came back normal and I stopped producing the milk.  We didn't know then it was because of the tumour.

 

At this point they don't want to take out the tumour as it behaves a bit differently than  a pituitary adenoma in that it invades the tissue it's attached to instead of just sitting on top of it.  I'd lose my pitiutary function totally or the loss of eyesight.  At this point they say the symptoms are worse than the treatment.  Good enough for me! 

 

How are you finding the hormone replacement? 


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#8 kristenloeh

 
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Posted 09 March 2013 - 08:46 PM

The Cabergoline is making me insanely ill. We are hoping my body will adjust to is after a month or so. I go in to get my blood work done to see if it's making any difference or not, and then an MRI in 3 months to see if it's doing it's job with shrinking the tumor. I also need to go and get my thyroid panels done because they are pretty sure I have hypothyroidism. I also have very low cortisol, so I'm on Hydracortisone for the rest of my left as well. *fingers crossed it all works and I can find some relief from these horrid migraines* 


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Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#9 Kamma

 
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Posted 10 March 2013 - 05:35 AM

That is absolutely horrible that you have to go through all that on top of figuring out and adapting to the gluten free diet and lifestyle.  The migraines are insidious, aren't they?  One could just about go through anything in life if it wasn't accompanied by a huge whacking throbbing in the head. 

 

Once the tumour shrinks or it's removed, will your pituitary function normally?


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#10 kristenloeh

 
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Posted 10 March 2013 - 08:18 PM

It can only function normally with hormone therapy the rest of my life. After going through daily migraines, kidney stone 6 different times and the Celiac, I think I can pretty much get through anything at this point.


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Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#11 GottaSki

 
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Posted 10 March 2013 - 08:45 PM

It can only function normally with hormone therapy the rest of my life. After going through daily migraines, kidney stone 6 different times and the Celiac, I think I can pretty much get through anything at this point.

 

Yes, you can get through anything....the bad, tough and rotten -- along with the good and inspiring!  I am in awe of you...keep the faith.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 Kamma

 
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Posted 11 March 2013 - 02:55 PM

It can only function normally with hormone therapy the rest of my life. After going through daily migraines, kidney stone 6 different times and the Celiac, I think I can pretty much get through anything at this point.

 

Yes, you can.  You really can.  I know when I was diagnosed with my tumour and facing the consequences of an eventual surgery and what that would mean I really took a good long look at life and what it meant.  You come to accept a lot of things and try not to sweat too much over the small stuff.  You find the reserves to keep going and dig really hard to stay resolute and calm and try and keep finding something to be positive about.  "What ifs" get discarded as too heavy and you try and live very much for the present. 

 

Keep going, kristenleoh.  You have much bravery, chatzpa and strength.  Big hug to you.

 

Kamma


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#13 kristenloeh

 
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Posted 12 March 2013 - 12:20 AM

You are both too kind, and Kamma, you seem even more strong and badass than I am :)


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Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#14 Kamma

 
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Posted 12 March 2013 - 02:37 AM

Keep me posted on how you progress with the hormones and the state of the tumour.  You can pm me if you want. 


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#15 kristenloeh

 
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Posted 12 March 2013 - 04:02 PM

I talked to my Endo today and they are putting me on a different medication for the tumor since the Cabergoline is making me really sick. I start it today and if it makes me sick as well, then the next step will probably be surgery.


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Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3





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