Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Results....


kristenloeh

Recommended Posts

kristenloeh Community Regular

I got my labs back yesterday. The tumor is active. I am very low on Cortisol, very high on Prolactin, and my Thyroid is boarderline. I start a hormone treatment soon to start shrinking the tumor and getting my hormones back on track. They are hoping that with this it will reduce if not stop my migraines. Also seeing a neurosurgeon soon to see what he thinks. I should know even more today as to what exactly will be happening with the hormone treatments.

 

Thank you all for your support, I will let you know what else I figure out today.

 

These last few weeks have been hell. Always in pain and it had finally got to me that I was a danger to myself and had to be hospitalized yesterday. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 87
  • Created
  • Last Reply
Jestgar Rising Star

So sorry.  Lots of hugs to you, and hang in there. :(

IrishHeart Veteran

Sorry to hear this, Kristen and I send you good thoughts, prayers, and hugs as well. 

 

Hope the neuro can do something more for you. 

GottaSki Mentor

Big Hug.

Along with prayers for your healing, reduction in pain and the docs that help you to have gifted hands and knowledge.

mushroom Proficient

Here's {{{{{hugs}}}}} amd prayers from me, too.  We're with you. 

Celiac Mindwarp Community Regular

Sending hugs too, thinking of you x

kristenloeh Community Regular

So today I found out that with the type of tumor I have with the prolactin really high, I am currently infertile. That was a huge hit to me. We are hoping that once the tumor has been reduced in size, and my hormone levels get back to normal, I will become fertile again. *crossing fingers* 

 

The docs have confirmed that the tumor is the cause of my pain, so the only thing that can help the pain until it starts to shrink is oxycodone. 

 

I have started one of the hormone treatments, the hydrocortisone to bring my cortisol and adrenal up to normal levels, but will have to take it for the rest of my life. I start the prolactin hormone therapy to reduce those levels next week. I am getting more Thyroid panels done next week to see how low my Thyroid levels really are and more than likely will be on Thyroid hormone therapy for the rest of my life as well. 

 

My doctors have also referred me to a clinic to receive my "green card" so that I can use medical marijuana for my pain so that I won't have to rely on opiates so much. 

 

We should know after about 6 weeks once I start the hormone treatment for the prolactin levels to know if it's working the way it's supposed to. If that fails, or I can't tolerate the meds, then surgery will be the next option. 

 

Sorry if this post is all over the place and may not make too much sense, my oxy just kicked in and I'm a bit loopy at the moment, haha.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Loey Rising Star

So I had an MRI the other week and they finally called me with the results. Looks like a I have a rather large brain tumor that is more than likely what has been causing my chronic migraines. Needless to say, I'm pretty flipping scared....

I go in to the docs tomorrow for more blood tests and I see my neurologist on the 26th to figure out the plan of how we are going to go about getting it removed and what not.

So just send positive thoughts my way please? I need them pretty bad right now.....

 

Hang in there honey. We'll all be pulling for you and keeping you in our thoughts and prayers. Hopefully you have the best Neurologist available.

 

Sending positive energy, healing hugs, and lots of love,

Loey

 

P.S. remember we're all here for you.  

Loey Rising Star

We have a bit more information. The tumor is NOT cancerous. It's about the size of my pituitary gland and it is in the back of the gland, so it's not messing with my optic or my sinuses, which is a good thing, but in a way, a bit bitter sweet, since now instead of the surgery option being easy and through my nose, they will have to go in through my skull more than likely. We do not know my treatment methods yet, but it's more than likely going to be brain surgery.

So, at least that's a bit of good news before Xmas :)

 

Sending extra (((healing hugs))) and lots of love  :wub:  :wub:

 

Please keep us posted.

 

Love,

Loey

Loey Rising Star

So today I found out that with the type of tumor I have with the prolactin really high, I am currently infertile. That was a huge hit to me. We are hoping that once the tumor has been reduced in size, and my hormone levels get back to normal, I will become fertile again. *crossing fingers* 

 

The docs have confirmed that the tumor is the cause of my pain, so the only thing that can help the pain until it starts to shrink is oxycodone. 

 

I have started one of the hormone treatments, the hydrocortisone to bring my cortisol and adrenal up to normal levels, but will have to take it for the rest of my life. I start the prolactin hormone therapy to reduce those levels next week. I am getting more Thyroid panels done next week to see how low my Thyroid levels really are and more than likely will be on Thyroid hormone therapy for the rest of my life as well. 

 

My doctors have also referred me to a clinic to receive my "green card" so that I can use medical marijuana for my pain so that I won't have to rely on opiates so much. 

 

We should know after about 6 weeks once I start the hormone treatment for the prolactin levels to know if it's working the way it's supposed to. If that fails, or I can't tolerate the meds, then surgery will be the next option. 

 

Sorry if this post is all over the place and may not make too much sense, my oxy just kicked in and I'm a bit loopy at the moment, haha.

 

No apologies ever necessary. As for the infertility. I thought I was infertile and my son just turned 21 so try to keep that in mind. Hormone therapy can work wonders. 

 

Continuing to send prayers, healing hugs, positive energy & Love,

Loey

 

P.S. sorry I didn't muli-quote.

Loey Rising Star

Since the tumor seems to be in the back of my pituitary, the neurologist can't do much since "technically" it's not IN my brain. So I talk to an endocrinologist about what other tests she wants me to do, to see if it's "active" or not, (messing with my hormones and/or secreting them), and then from there, we will hopefully start having a treatment plan in place. Been in and out of the ER from migraines and sever nausea over the holidays and these last few days. Trying to hang in there. Thanks to you all for the well wishes :)

 

That's great news about possibly not needing surgery. I have thyroid issues and I've been seeing a naturopath. She's got me on homeopathic thyroid meds (and many others to boost my immune system). Please let us know how you're doing when you feel up to posting. I hope the pain subsides and you improve daily!

 

Love & even more (((healing hugs)))

Loey

 

I got my labs back yesterday. The tumor is active. I am very low on Cortisol, very high on Prolactin, and my Thyroid is boarderline. I start a hormone treatment soon to start shrinking the tumor and getting my hormones back on track. They are hoping that with this it will reduce if not stop my migraines. Also seeing a neurosurgeon soon to see what he thinks. I should know even more today as to what exactly will be happening with the hormone treatments.

 

Thank you all for your support, I will let you know what else I figure out today.

 

These last few weeks have been hell. Always in pain and it had finally got to me that I was a danger to myself and had to be hospitalized yesterday. 

 

Sorry about the hospitalization. I hope they are keeping you comfortable. Please keep us posted when your're  up to it. We're all pulling for you!!!!!

 

((((HUGS)))) and more prayers and love,

Loey

kristenloeh Community Regular

So, Tuesday I started my hormone treatment to hopefully shrink the tumor and balance my Prolactin levels and hopefully gain back my fertility.  Unfortunately, the hormones are making me insanely ill (it makes me feel like I was glutened, times 100) and we won't know if it's working for a couple of months. I have no idea how I'm going to find the strength to get through how the meds are making me feel, I'd almost rather have surgery...

GottaSki Mentor

Hang in there Kristen!

 

We are all pulling for you...so sorry to hear how sick the hormone treatment is making you.

 

Prayers continue that this will provide a great result :)

Celiac Mindwarp Community Regular

Hope things improve for you with the treatment. When things are really rough, I try and watch my favorite comedies. My Name is Earl was my friend :)

Thinking of you x

kristenloeh Community Regular

I'm all about my guilty pleasure of reality TV; I watch a lot of Bravo :P

kareng Grand Master

I'm all about my guilty pleasure of reality TV; I watch a lot of Bravo :P

When I feel sick, I have been known to watch Sponge Bob and Dora the Explorer! Silly, happy things. Or housewives of anywhere. Do real people actually act like that?

kristenloeh Community Regular

When I feel sick, I have been known to watch Sponge Bob and Dora the Explorer! Silly, happy things. Or housewives of anywhere. Do real people actually act like that?

 

 

Haha, for all I know, since I haven't been out to be social in almost a month now, they very well may act like that. Rich people problems. Gotta love it! I'm watching a Real Housewives of Jersey marathon. Man, I love it. Makes me feel like I'm not so whiney when I'm sad about my health when I see them crying because they broke a damn nail. :D

kristenloeh Community Regular

So, one of the major side effects I get from this hormone therapy is that food goes just straight through me. When you're sick like that, what do you eat/drink that has helped keep nutrients in you? I'm just so afraid is eat because I know it's going to hurt really bad and it will not stay in for very long..... I drink a lot of vitamin water to make sure I keep the electrolytes in my body, at least.....

mushroom Proficient

Can you try something that has a chance to stick to the sides, like mashed potato? applesauce? rice?  Things that digest easily that do not require a lot of effort by the digestive system.

kristenloeh Community Regular

Mashed potatoes have failed, but I will try the applesauce and rice. :) Thanks! It's much better than nothing! We shall see after tomorrow night if either of those will work. I take my next dose tomorrow night.

mushroom Proficient

I will keep my fingers crossed for you :)

GottaSki Mentor

Shroomie is right...keep trying things that are already broken down -- applesauce and smoothies...I put everything in the blender for a very long time -- here is a good giggle to go along with your smoothies...

 

 

And if mashed potato failed...try mashed sweet potato!

JNBunnie1 Community Regular

Peanut butter?

kristenloeh Community Regular

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.

Celiac Ninja Enthusiast

I' so sorry you have to go through this, I wil totaly pray for you. My bio dad had a brain tumor too, had brain surgery, didn't look so good when he came out, kinda made me queezy to see the pictures of his bandaged head BUT he is better and eating healthy and doing iron man stuff! I am going to pray you make it through with flying colors!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,018
    • Most Online (within 30 mins)
      7,748

    Laney71
    Newest Member
    Laney71
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.