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kristenloeh

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kristenloeh Community Regular
kristenloeh
Posted
  • Author

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. 

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  • Replies 87
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Jestgar Rising Star
Jestgar
Posted

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

IrishHeart Veteran
IrishHeart
Posted

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
GottaSki
Posted

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
mushroom
Posted

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

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Sending hugs too, thinking of you x

kristenloeh Community Regular
kristenloeh
Posted
  • Author

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.

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Loey Rising Star
Loey
Posted

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
Loey
Posted

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
Loey
Posted

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
Loey
Posted

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
kristenloeh
Posted
  • Author

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
GottaSki
Posted

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
Celiac Mindwarp
Posted

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
kristenloeh
Posted
  • Author

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

kareng Grand Master
kareng
Posted

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
kristenloeh
Posted
  • Author

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
kristenloeh
Posted
  • Author

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
mushroom
Posted

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
kristenloeh
Posted
  • Author

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
mushroom
Posted

I will keep my fingers crossed for you :)

GottaSki Mentor
GottaSki
Posted

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
JNBunnie1
Posted

Peanut butter?

kristenloeh Community Regular
kristenloeh
Posted
  • Author

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
Celiac Ninja
Posted

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!

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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