Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Pituitary Adenoma


  • Please log in to reply

48 replies to this topic

#16 kristenloeh

 
kristenloeh

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 140 posts
 

Posted 13 March 2013 - 03:54 AM

So, I started my new meds today and after about an hour, my heart was pounding so hard and fast I thought it was going to burst out of my chest, that's in addition to the same GI side effects as the other one. I'm going in today for my thyroid tests and am going to stop by my endo's to tell her and see what she says. Looks like surgery may very well be in the future for me. Shiza.


  • 0

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


Celiac.com Sponsor:

#17 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 13 March 2013 - 12:57 PM

Oh, that's too bad.  I know you must have been hoping that this drug would do the trick without the side effects.  The heart racing like mad must have been frightening.  Could it be an initial effect that will fade with time?

 

What did your endo say when you dropped in on her?


  • 0

#18 kristenloeh

 
kristenloeh

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 140 posts
 

Posted 13 March 2013 - 06:40 PM

Endo has officially taken me off of the meds. That side effect with my heart was a major one and could have killed me. So, in about 2 weeks, I will have a surgery consult. So I will be definitely be having surgery sometime in the near future. :-/ 


  • 0

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


#19 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 13 March 2013 - 08:11 PM

Oh Sweetie...I am sorry the new protocol failed.

 

Good thoughts starting right now.....your surgery consult with go well.  I know it.

 

Hugs!!!


  • 0

-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 :)


#20 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 14 March 2013 - 02:49 AM

That's too bad.  I was rooting for the medication to work but we don't want you dropping dead of heart failure.  :(

Do you know which type of surgery method they will be using?  All of the reading that I have done says that the nasal method is the most common and leaves not a trace, scar or wound after. 

 

You must feel anxious.  Hang in there.  It's going to work out okay.  The surgery might just do the trick of total removal and no recurrence and all that will be further required is the hormone replacement therapy.

 

Great big hug.

 

Kamma


  • 0

#21 kristenloeh

 
kristenloeh

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 140 posts
 

Posted 14 March 2013 - 04:33 PM

That's too bad.  I was rooting for the medication to work but we don't want you dropping dead of heart failure.  :(

Do you know which type of surgery method they will be using?  All of the reading that I have done says that the nasal method is the most common and leaves not a trace, scar or wound after. 

 

You must feel anxious.  Hang in there.  It's going to work out okay.  The surgery might just do the trick of total removal and no recurrence and all that will be further required is the hormone replacement therapy.

 

Great big hug.

 

Kamma

 

We won't know how they will be going in until the consult in a couple of weeks. My tumor is behind my pituitary, so it's closer to my brain than normal ones, so it could be a possibility of them going through the top of my skull instead of going through my nose. I was getting used to the fact/hope that the meds were going to be what was going to work, so now being faced once again with the reality of surgery and it now being for certain that I'm going to have to have surgery has got me pretty scared. I've never had to have a serious surgery like this to where you have to be hospitalized. I've never have had to be actually hospitalized, so I guess I need to start planning for food for my stay since I've heard horror stories about the lack of gluten free options while at the hospital. >.<


  • 0

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


#22 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 15 March 2013 - 05:02 AM

Yeah, it's a scary thought to think of someone going ito your brain.  I understand totally.  The comforting thought is that neurosurgeons are those at the very top of the medical field.  They don't pass 'em on in medical school if they can't do the job and do it impeccably.  If you get a choice in a neurosurgeon, ask to see how many of these particular types of surgerys they have performed. 

 

kristenloeh, you're going to get through this and the outcome will be positive.  When you start feeling the fear rise, try and hold onto this thought.  You never know, the worst part of the whole hospital experience might be the food they serve you. ;).

 

Don't worry about the 'what if's'.  Focus and act on what you have control over.  I think it's a great idea to figure out the food that you are going to need.  Make sure you buy some nice treats for yourself for after you wake up from the surgery.  Lord, I'd pay an arm and a leg for a whole bunch of gluten free licorice on this occasion even if I had to send to Switzerland for it.

 

This whole experience is frightening.  Feel the fear but also keep grounded.  You're strong, smart and capable of handling what comes after.  If you need comfort to help ease the jitters, shout it out here.  We'll support you.

 

Big hug,

Kamma


  • 0

#23 kristenloeh

 
kristenloeh

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 140 posts
 

Posted 17 March 2013 - 01:41 AM

I'm trying to stay strong about it all, but then once I'm blind sided with pain, at least a few times a day, it starts to get to me, A LOT. It seems like I cannot go a single day without crying and it's really getting to me. I sound like a whiny b*tch and I hate it, lol.


  • 0

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


#24 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 17 March 2013 - 05:31 AM

No, sweetheart, you sound like a woman that is dealing with a helluva lot and trying to get through it.  Whiny bitches moan about small things like breaking a nail, having streaks from their foam on suntan and not plucking their eye brows in time.  You are most assuredly not a whiny bitch.  Let that thought be banished from your head - you already have a lot going on in there.

 

Crying is a good thing to do.  It releases a lot.  I spent a year crying in the most inopportune situations and times.  One time I was at a farmer's market, getting my free run eggs.  I was late in coming and they had no more eggs.  I just started bawling and I mean bawling.  An old man stopped and thought something horrible had happened to me and I looked at him with tears running down my face and said, No, I can't have any eggs and just started bawling again.  He gave me a strange look and hurriedly went on his way.  Jeesh.  Things like that happened all the time.  People thought I was a crackpot.  I was never a 'crier' before but I sure made up for it in that year. 

 

:rolleyes:

 

What is the cause of the pain you are experiencing, kristenloeh?


  • 1

#25 kristenloeh

 
kristenloeh

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 140 posts
 

Posted 17 March 2013 - 05:57 AM

I cry SO randomly because the tumor is producing so much more prolactin that my body thinks I'm preggers, so I have ALL the side effects of being preggers without getting to have the baby! Also, since it's a prolactin producing tumor, it's causing daily, constant migraines and the only thing that helps is oxycodone and for a short time my medical marijuana. Unfortunately, I have no painkillers right now and can't get a new script for a while, so I'm kind of out of luck on the pain relief front.

 

Once I started bawling because my hair straightener wasn't working right. I yanked out of the wall, threw it across the house and flipped out. I'm usually not a crier either unless I'm insanely pissed or depressed. SO damn annoying!!


  • 0

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


#26 kristenloeh

 
kristenloeh

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 140 posts
 

Posted 19 March 2013 - 02:02 AM

I have my surgical consultation on April 3rd, so hoping we will know after that when we can expect the surgery to happen if the neurosurgeon says he feels confident in being able to remove the tumor. If he can't remove it, or can't get all of it, the next step would be radiation. *crosses fingers that won't be the case*


  • 0

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


#27 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 19 March 2013 - 03:15 AM

Fingers crossed too that you won't have to have radiation.  Radiation is one of my fears as well.  The only good thing I can say about that is that the effects of radiation do go away after time.  :mellow:

 

You're on an emotional rollercoaster ride with the hormonal state that you're body is in and the anticipatory/anxiety feelings that all this is bringing on.  Throwing hair straighteners is totally acceptable and understandable.  When we're in the clutches of the hormones and we don't feel any control over our emotional selves life just feels rotten.  One of the things that I do to kind of help maintain a steady, calm presence is to remind myself that the crazy, tearfilled emotions that I'm feeling are 'not me' - just my body  wildly fluctuating.  It helped to be able to stand back and just observe instead of getting caught up and lost in it.  It's called 'mindfullness training' in Western medical circles and is derived from Buddhist meditation practices.  They also use it to help people with pain and depression so it could also be useful for the migraines until you get your prescription filled.  Just google it if you want to know more.


  • 1

#28 kristenloeh

 
kristenloeh

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 140 posts
 

Posted 20 March 2013 - 06:51 AM

Hmm, interesting, I'll take a look at it.

 

Good news: My thyroid levels came back normal, so no Hypothyroidism for me :)

 

Bad news: This migraine I had for 3 days finally made me break down and go to the hospital last night.


  • 0

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


#29 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,312 posts
 

Posted 20 March 2013 - 06:55 AM

Hmm, interesting, I'll take a look at it. Good news: My thyroid levels came back normal, so no Hypothyroidism for me :) Bad news: This migraine I had for 3 days finally made me break down and go to the hospital last night.


Did it help? I feel so bad for you. I wish I lived closer so I could drive you or walk your dog or do your laundry or make you chicken soup.
  • 1

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#30 kristenloeh

 
kristenloeh

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 140 posts
 

Posted 20 March 2013 - 08:58 AM

Did it help? I feel so bad for you. I wish I lived closer so I could drive you or walk your dog or do your laundry or make you chicken soup.

 

Yeah, they gave me some percocet along with a cocktail of toradol, compazine and benadryl. Got the pain down to about a 4 or so, and then they gave me a script for Floricet until I can get in with my primary care doc. My jaw has been hurting like hell so I haven't been able to eat much as of the last 5 days. All symptoms point to TMJ and I'm REALLY hoping that is NOT the case. 

 

Aww, you're so very sweet. Thankfully, my mom and step-dad have been great with taking care of me through all of this. 


  • 0

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





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: