Endo visit

So, I'm not really sure why I go to my endocrinologist.  Basically I pay $40 to have the doctor give me a pat on the back for having low prolactin levels and randomly wiggle his finger (I will explain that more in a sec).  I can do that for myself or have my hubby do it and put that $40 towards a new outfit or something!  In order to feel like my visit was worth while I will share a couple of pointers that may help some of you save $40 :)  If you don't get your blood tested regularly there are some ways to see if the tumor is impacting your vision.

Self  vision test:  Pick something in you living room to focus on.  I usually chose the pretty orange poppy picture on my wall.  Sit so that the picture (or whatever you chose to focus on) is in your peripheral vision.  If you can still see the picture, you are good to go.  If not, you better go to the eye doctor and get a field of vision test.  You see, if your peripheral vision is going out, you won't see black spots or anything like that.  Your brain will actually fill in that area with what it thinks you are supposed to see.  If I were having problems with my peripheral vision and I was trying to see my orange poppy picture, my brain would most likely fill in that area with wall instead.  Make sense?

Two person vision test:  Have your hubby, significant other, or random neighbor or friend or whoever, hold a finger in your peripheral vision while you look straight ahead (focusing on something).  Have them randomly wiggle a finger in several different areas of your peripheral and AS SOON AS YOU SEE THE WIGGLE say so.  Say wiggle, or finger or whatever your magic word is.  If you see the wiggle, great....if not, get a field of vision test.

So, I get my blood tested fairly regularly at my family doctor lab.  My last prolactin level was 17 :)  I'm ok with that!  *pat pat*  Unless I have a huge jump in my levels I will probably not go back to the endo.  Sorry bud....my $40 will be going back to me :)

So far behind!!!!

Oh, where to start!!!  Oh wait, I'm STILL trying to keep stress levels down, so I won't stress about it, I will just type :)  I've learned so much in the last month and I can't wait to share it ALL, but alas, baby steps.  So, update on stress.  I've let go my main stress and am happy to report that I can breathe and i don't feel the huge knot in my gut!  Don't get me wrong...I still have plenty to do, but now I can do it instead of having my life completely sucked into one never ending project!  I have been getting lots more sleep as well, and I have learned that sleep majorly reduces stress!  So get some sleep!  In fact, as soon as you are done reading this, take a nap :)  You most likely deserve it.

My levels are back down to 103 as of a month ago.  I really want to break that 100 mark!  I went to see the endo and we had a nice chat.  He spent 45 minutes with me answering questions and having me explain what I have been doing.  He said that he can't argue with the fact that the Frankincense has been lowering my levels and shrinking my tumor.  He says to keep taking the frankincense.  After all, it is what the wisemen gave to Baby Jesus, so it must be good stuff!  (He actually said that).  He wanted me to go on Cabergoline and just try it out as he is worried that I haven't had more than 5 periods in about that many years!  I learned that us prolactinoma people are at high risk for osteoporosis since our estrogen/progesterone cycles are few and far between!  I haven't started cycling again since I stopped nursing so I was stressing about it too!  I really hated bromo and couldn't stand to be on it so I really didn't want to take Cabergoline either...  I have heard horror stories about it and so I drug my feet and thunk and prayed about it.  I finally decided to go on it for a month and try it out along with my essential oils and see how it went.  So far, massive headaches (my hubby thinks I'm having my first migraines ever) that last for days, dizziness, near blackouts, sinus crap.....yeah, it sucks.  I'm using the oils to try to counteract the side effects and they dull them, but the medicine induced headaches suck.  I have another appt. in a couple weeks.

Dr. Appt in a nutshell!

I don't have much time, so this is the nutshell version...I went to the doc today.  My tumor actually has shrunk from 12mm to 10mm since my last MRI.  My doc appreciated me filling him in, neatly skirted the fact that I've been using essential oils, told me that I was on the right track with my shrinking tumor and lowering prolactin levels and referred me to an endocrinologist in town that is "conservative, anti-surgery and open-minded"!  ha ha!  I will scan my MRI results in when I have more time, but that is pretty much what he said.  He didn't think there was any need for me to go on any Rx's right now, but I need to have more blood tests in a month and we would reevaluate in a month.  He said he thinks my levels will decrease dramatically now that I am no longer nursing!  So, I have an appt w/ a "conservative, anti-surgery and open-minded" endo in about a month. Keep posted...more to come!

Specialists Specialists specialists

 I went to 3 specialists in Utah to see what is up w/ my head. The tumor is definitely pinching my optic nerves, but not too much yet. It is growing rapidly. It has tripled in size in the last year and a half. Most of that probably has been occurring since I started nursing, so in the last 5 months. Here are the results in a nutshell....
1)Endocrinologist (hormone Doc): My prolactin is out of whack(we already knew this)I can take pills the rest of my life or have surgery.
2)Eye Specialist: I did a field of vision test and I am not losing my eyesight yet....I will be doing these tests every other month while I continue nursing.
3)Neurosurgeon: It would be best for me to get surgery sooner than later. As the tumor grows it will be harder to operate and get everything and not get stuff that they don't want to get. (Sorry I didn't word that better...)
Options:
a) Quit nursing immediately, Medication, blood tests and MRI's the rest of my life monitoring the tumor and hope it starts to shrink. If it continues to grow I will have to have surgery anyway.
b) Brain Surgery. If surgery goes well I will not have to be on medications the rest of my life and it will be much easier to get pregnant in the future and I will be able to nurse. If they don't get all the tumor, it will grow back and I will continue having the same problems. If they get too much of my pituitary gland w/ the tumor I will be on hormone replacements the rest of my life and I will never be able to nurse and it will be hard to have kids.

So, there is my predicament. I will continue nursing for the next few months while getting blood tests and vision tests every other month to make sure the tumor is not affecting me until we decide what to do. I will also be taking herbal supplements (Vitex) while we are deciding and while they are monitoring me to see if that helps. If that helps, I will probably do vitex long term and have another MRI in a bit to see if it shrinks on vitex. That way I can nurse and hopefully keep this thing from growing at the same time as nursing is the main thing that makes it grow.

Currently I struggle with headaches (almost 24/7), lack of energy, and out of control milk production.