Treatment Plan

I went to my endocrinologist today for a follow up on some bloodwork. Since he had no records because he's in a different hospital system. He said my prolactin is still elevated but my other hormones look fine, including my cortisol.

Then he told me he thinks my tumor is non-active. Meaning its not secreting anything and I have what's know as Stalk Syndrome. Basically the channel your hormones run back and forth on are being blocked by this tumor. Which is causing the prolactin levels to rise and the dopamine levels to plummet. It's good that none of my other hormones are wacky. I'm kinda confused by this news but, he said with this medicine I am going to take if the tumor was secreting it would shrink it. But he doesn't think that's the case.

So, I will be taking a pill 2x's a week to get my hormones back in balance and this will be long term.. As in Year to 3 years.. With 3 month check ins and bloodwork and MRI's to monitor
it all.

The medicine may be expensive he warned and if you know how stressed about $$ I've been. Well, it tipped me over the scale of stress. Coupled with
This new blessing of a job coming up.. I have nothing to wear to it and everyone wants or needs money. It's getting overwhelming. Trying to trust God but, it's hard when your spending hundreds of dollars on medical stuff and the emotional side of this whole thing is just crushing. One thing I hadn't shared is that I have to choose to have any more kids or treat my tumor. So basically this f'ing tumor is taking that choice from me! It's hard for me.. I try to be grateful for the two I have and so on but, I am angry about it stealing something from me. I also have to lose 100 lbs! On my own, it's just too much and my eye thing with my glaucoma medicine is just awful I should stop writing.. Getting more depressed. I am going to my third interview at Target and see how much this medicine is. :-(( I know there's good in here but it's just so much.. Bear with me while I process. Thanks!

It's all in my head, literally

It's been a while since I updated. I went to my Neuro last week and did some field sobriety tests -- as I am familiar with them.. (Walking a straight line, touching your nose etc) turns out that she thinks based on my papilledema diagnosis that I have what is called Pseudo Tumor Cerebri. This is confusing to some, so let me break it down.. Basically, my brain has a lot of pressure surrounding it which is causing my optic nerves to swell and that in turn causes headaches. Pseudo Tumor just means I am having tumor related symptoms with my eyes without a tumor. This is NOT related to my actual tumor on my pituitary gland.

This PTC is common in obese women of my childbearing age. So, in that sense it's related to my Pit Tumor ( which makes it hard to lose weight) I was advised to lose A LOT of weight to help lower the pressure in my head. For now I am on glaucoma medicine which is essentially a diuretic. It does help but, makes me very absentminded and forgetful.. It's frustrating for me. I talked to my nurse and she said it is a side effect although not the most common one to have.. Go figure! :)

My eye doc did a vision test and then said to stay on the meds and maybe even increase the dosage since I'm on the smallest dose. Apparently my GP wasn't comfortable prescribing this medicine for me so he gave me a low dose. I will do a follow up with them both in January and made need a spinal tap to check how high the pressure is. That freaks me out!!

So, this week I have one appt with my endocrinologist on Wed and hopefully with my current blood work he will be ready with a plan of action for shrinking this tumor (and my body) :-)

Thanks for keeping up with me! It's great to know people care! <3