Putting the cart before the horse is not always a bad thing!

So, I have a plan....but no doctor!  I figure that's ok because I will make sure any doctor I go to will follow my regimine and will see that I am my own advocate and that they (or their staff) will not try to take advantage of me or my family in any way, shape or form!   My plan is as follows:
-Continue to nurse until April 6th. (Baby will be 8 months old)
-Continue taking Vitex but decrease amount I take as it should be built up in my system.
-Go to my new doctor in a 2 weeks (if I can find one by then) and have my prolactin tested.
-See if my levels have improved since taking vitex
-Do a field of vision test in 2 weeks to make sure there is no urgency in my plan to quit nursing.
-Start using essential oils.
-Have another prolactin test in April before I quit nursing.
-Have another MRI around then too.
If my prolactin and MRI look good and show a decreased prolactin level and shrinking tumor I will continue on my vitex/essential oil regiman.  If not, I will probably go on cabergoline and see if that helps.  I've decided surgery is my last option! 

Sounds like fun, huh?!?  Just to remind myself to stay motivated and why I am doing all this, I am adding a pic of my sweet little boy!

  Now do you all know why I want like15 more (not realistic, but you get the picture)!!!   Now I need to go out and find that doctor.....wish me luck!

Awards?!?

Thank you Suzanne over at Incognito Soapbox Confessions for giving me an award!  I must say I was excited and surprised!  My blog is only a few weeks old and I think about 4 people read it, but I am very grateful and exited!  Thanks Suzanne :)

I'm breaking up w/ my obgyn...

I'm changing doctors....my last obgyn took a month to tell me the results of my last MRI.  I called at least twice a week and they never called me back, so finally I went in to have a chat with them about urgency and they had the results in 5 minutes and the doctor made ten minutes in the middle of a very busy day (the waiting room was full) to discuss the results with me.  Of course I had to make a stink to get that kind of service, but I was getting MAD!

This isn't the only problem we've had with this office.  Just last week we got a bill that we were not supposed to get.  We had talked to the billing many months earlier and they said they would make adjustments and that it would be taken care of.  Well, guess what?!?  They made a mistake, but would they admit it????? NO!  Of course not!  That would mean they wouldn't get the $187.63 that we don't owe them but now we do!?  Really?!?  Is this $187.63 really worth my loyal patronage?  I mean, I have all sorts of medical problems and I plan on having like 5 more kids!  It's not like they just see me once every other year for a pap smear!  Not to mention, I have 3 sister-in-laws that go to him.....they will get my take on all of my crappy experiences with this doc and staff and I guarantee they will be having more kids too!  I mean just between the 4 of us they will be missing out of tens of thousands of dollars!  I plan on telling everyone I know that goes to them of my experiences and anyone that asks "do you know of a good obgyn?"  I will say,"I know of a bad one that you definitely should not go to!"  I'm only 28 and most of my friends either don't have kids or are on their first of many.....they will not be going to my ex-obgyn.  Yep, I just broke up with them and it's their loss!!!

Now, time to search for the perfect obgyn....wish me luck.  If anyone know of a good one in the Idaho Falls area, let me know...I have a couple in mind, but we shall see.  I'm really not that picky, I just want someone who is on the ball (including their staff) and who lives up to their word and isn't creepy.  Is that too much to ask???

Alternative Treatments

I am breastfeeding and I don't want to quit even though my prolactinoma is growing quite a bit from nursing. My endocrinologist and other doc's have told me I should start taking cabergoline or bromocriptine, but doing so would require me to quit nursing. Has anyone tried herbal supplements or essential oils that have worked?

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.

From Micro to Macro (A brief history)

So I decided to post a little background for those interested.  I was diagnosed almost 2 years ago with hyperprolactinoma due to infertility.  My levels at that time were 60 and my MRI showed a tumor 7 mm.  My doctor put me on bromocriptine and clomid.  I was pregnant the next month!  We were so thrilled!!!  9 weeks later we miscarried.  We didn't find out until my 12 week appointment when they doc couldn't find a heartbeat and so he did an ultrasound and confirmed what the heartbeat monitor told us.  After that, I went back on Bromocriptine and clomid.  I was on them for 5 months before we concieved again!

Last August I gave birth to a beautiful, healthy baby boy.  I started nursing and I started getting the headaches.  (I presently struggle with headaches, loss of energy, and milk production that is out of control!)  Once my baby was about 2 months old I talked to my obgyn about my prolactinoma and we got that ball rolling again.  I had another MRI and a series of bloodtests.  My tumor went from 7mm to 1.2cm from the time I was diagnosed and my prolactin was up to 240!  (I think one of the reasons my prolactin and tumor are out of control now is because we never got it under control before I got pregnant.) It was suggested that I go to a Neurosurgeon who suggested I go to an , Endocrinologist who suggested I go do an Eye Specialist....needless to say, it was a busy day!!!  I will post what all of them said in my next post.  I have a lot of options so consider so wish me luck!

Am I crazy???

So am I crazy to want to nurst my baby as long as possible???  Nursing is to prolactinoma what eating bacon everyday is to someone with high cholesterol!  It isn't the cause, but it definately speeds up the process!!!  Anyways, I was reading in my "Baby's First Year" book about weaning and it made me cry!  Maybe my hormones are whacked, but it makes me sad to think about not nursing!  It took a lot to get him here and so I want to give him the best!  But at what cost?  All of the medications the doctors want me to take would keep me from nursing, but I ask them about herbal stuff and they tell me straight up that they have no idea if it would help or not and they are not willing to look into it because they don't deal with herbal stuff.  Aren't docs supposed to help people?  Then how come they won't look into something that would help me nurse and help my prolactinoma?  Frustrating.  So I am on my own when it comes to that kind of stuff.  If anyone out there has any experience with herbal stuff/essential oils that might help please let me know!

I am clautrophobic

So a few weeks ago I went into one of these:

If any of you are claustrophobic, you know this is not fun!!!  I hate parking garages, elevators and mri machines.....that's pretty much the list of my claustrophobia places, so if you ever want to see me freak out just trick me into going into one of those three places.  I literally cried myself to sleep in the mri machine, but sleep was the only thing I could do since I have to hold absolutely still or I would have to do it again!!!  Any way, about a year and a half ago when we were trying to get pregnant I went through a ton of testing to find out what the problem was.  They diagnosed me with prolactinoma.  In a nutshell, it is a benign tumor on my pituitary gland that makes it over produce prolactin and makes my body think it is pregnant all the time.  So, back when I was diagnosed it was micro meaning less than 1 cm big.  Or in other words...not really a big deal.  I went on some medication to shrink it and was able to get pregnant....Well, now that we have had Tux my doc decided I needed to go back into that dreaded mri machine and get another scan.....

....Turns out this benign tumor has nearly doubled in size (macro or over a cm) and if it grows much bigger it may interfere w/ my optic chiasm (eyes) and I could go cross-eyed or blind.

Nisha thinks I'd be cute cross-eyed and that I should just let it get big :)  ha ha!
Anyway, I am going to see a neurosurgeon once I get all 9 lab results back (yes, that is 9 vials of my blood!!!!  Not fun) to see what the heck to do about this thing. Scottie gave me a blessing once we found out the mri results....I'm so grateful for my worthy priesthood holder.  Since then I've felt so at peace with it, I just know everything will be ok.

In case you couldn't tell by the title....

....I'm starting a blog to help people understand prolactinoma, myself included!!! What I've found since I've been diagnosed it that most people have no clue what in the heck prolactinoma is much less anything about it. This includes doctors, naturopaths, chiropractors, wellness coaches, nurses, engineers and cheerleaders! Not even google can tell you much....mainly what everyone knows: "causes, treatment, specific symptoms, diagnosis, affects of pregnancies, and sites other resources." or "Comprehensive overview covers symptoms, causes, treatment of this pituitary gland tumor." Well thanks google, but I want to know "can I nurse?", "is there other treatments besides bromocriptine and cabergoline or surgery?", "how hard it is to get pregnant with prolactinoma?", "am I going to go blind?". These are a few of the questions I had and still have! I will share some of my experiences and hope others will feel free to share theirs as well. Perhaps we can help each other learn what to expect and how to deal with this.