Macroprolactinemia no to be confused with macroprolactinoma Part 2

Ok, still not finding much or having much time to look into this, but my fellow tumor friend Erika found these case studies that are interesting so I thought I would share...

http://www.endocrine-abstracts.org/ea/0022/ea0022p628.htm

http://www.mayomedicallaboratories.com/test-catalog/print.php?unit_code=87843

So, from what I understand, macroprolactinemia is a production of "anti-prolactin" in response to the over production of prolactin.  The body does this to naturally combat high prolactin.   Not everyone that has high prolactin has macroprolactinemia unfortunately, but it is something that you can be tested for and hope for!

Hypomenorrhea and Shortened luteal phase

So, this may be another one of those you can skip over if you don't want to know about my monthly cycle....ha!  Anyway, here it goes. I will try to make it as scientific as possible but add links in case you are interested in what I am saying...Just trying to not make it too detailed so people don't gross out! ha ha! Ok, so I've been charting my cycle and so far I've decided I suffer from hypomenorrhea and Shortened luteal phase.  I know this is just from having high prolactin levels and I think it will normalize over the next couple of months.  I'm pretty sure that my progesterone is low as well as my estrogen.  It makes sense.  It also explains the miscarriage I had before Tux.  I want another baby NOW sooooo bad, but I would rather have it take longer to get pregnant and be able to stay pregnant than to get pregnant super fast and lose the baby.  The miscarriage was extremely devastating to me and I NEVER want to repeat how I felt during that time and the months following!

So, to help with the natural production of progesterone I have altered my regime.  I am adding 1-2 drops of Oregano and Thyme on my feet morning and night.  A few drops of Geranium over my adrenal glands and liver morning and night.  (Link to why Oregano, Thyme and Geranium)  I'm on a vitamin that had vitamin B6, but i am going to take an additional 50-200 mg. of vitamin B6.  I am waiting for the Thyme and Geranium to get here...I am soooooo anxious to get going on this new regime so I can hold my own little one in my arms :)  Most of my sister in laws (5 out of 6) are currently pregnant or recently had a baby so I am super baby hungry and a little green with jealousy.  I am truly happy for them, but I can't wait for another one of my own!

Frankincense Webinar

So, Dr. Hill just did an amazing webinar on Frankincense last night and I have to share it! I'm sorry that I've been posting so many webinars, but I've been so busy and these webinars are AWESOME! Anyway, I promise I will write a real blog really soon, but here is the webinar :)



To see more webinars click HERE!

Hormones and Essential Oils

Ok, the following is a webinar that was monumental in helping me understand where all of my problems started!  I mentioned this webinar back in April and I can't believe it's taken me so long to post!  I had some questions about hormones this last weekend while teaching some oil classes and I refered several people to this very webinar.  It talks a lot about menopause, but almost anyone that has hormone problems have symptoms of menopause and it is often cause by the same hormonal fluxes.  So, I am posting the first and second part of these hormone webinars....enjoy and happy learning!  Even if you are not interested at all in the oil/supplement parts of these webinar, the information included in the webinars on hormones are invaluable!!!!

Hormones and Essential Oils Part 1



Hormones and Essential Oils Part 2

I have a new regime!

My regime changes quite often as I find new things that work better for me, as my tumor shrinks or when I quit nursing, or when I (hopefully) get pregnant again!

I have now started to cycle so I am dropping Basil (finally...I hated that stuff, not fun to burp it up all day!!!)  Hopefully the Clary Sage kicks in full force soon!  I have also started taking some vitamins for Pre-Natal care...These vitamins are awesome though and have helped me in dozens of ways so far (energy, soreness, neck incapacity, stress reduction)!  I can't wait for my hopeful future baby to start soaking in them as well :)

Frankincense (antitumor):  2-3 drops internally (under my tongue) 3-4  times a day. Rub it on my forehead and onto my feet a couple times a day.

Balance Blend (balancing hormones and anxiety): Rub on my feet before I go to bed at night.

Clary Sage (treats infertility): Take 3-4 drops in a capsule day and night.

Every week I will be taking a different oil that will help keep me from plateauing with my levels and tumor.  They are:

Wild Orange, Clove, Lavender, Sandlewood, Patchouli, and grapefruit.  I will write about each as I start taking them.

Life Long Vitality Pack (Vitamins):  I take these as recommended on the package.

As needed:

Citrus Bliss Blend (Stress/anxiety reducer) or Whisper Blend (Stress/anxiety reducer plus hormone balancer):  Diffuse several times a day or wear it where I can smell it!

Macroprolactinemia no to be confused with macroprolactinoma

I received an very interesting and informative email the other day from my tumor friend Erika :)  I asked her if I could post it because I thought it was fascinating and I think EVERYONE should be aware of this...I have edited her email a little (with her permission) just to take out some of the personal stuff.  Here it is:

"I wanted to let you know about some really, really interesting info I found out from my endocrinologist at last night's appointment. (If you already know this info, stop reading at any point! It was completely new to me and I don't remember reading about it on your blog anywhere, so I have a feeling it may be new to you too).

 

My doctor is having me tested for Macroprolactinemia, which sounds so similar to "macroprolactinoma" but is very different. Basically, it means that some people have raised prolactin due to a tumor, let's say, and so they will test positive on prolactin tests. However, someone with macroprolactinemia also has an enzyme naturally present in their blood which acts as an antibody against the prolactin. It's kind of like how your immune system defends against illness - macroprolactinemia defends against prolactin's negative side effects. Apparently the test for macroprolactinemia has been used in tests for years but it's only been available to the public more recently (not sure exactly how long). Once this is confirmed in a person, it means that future MRIs and observation aren't really needed because the prolactin is balanced out by the macroprolacinemia, naturally. Some reports showed that of people with high prolactin tests, 22% also have macroprolactinemia, and now doctors are saying more people should be tested for this. I can't believe I hadn't heard of it until last night!"

 

Has anyone else heard of this and does anyone know where to find info on it?  I've done some basic googling but have yet to find out much.  I'm still looking into it and will post more when I know more!  Please share if you can!

This may be Too Much Info(TMI)...so if you are afraid of the word PERIOD (not . ) you ought to skip this one

Wow, that was a long title, but I though the guys out there should be warned (and maybe some of the girls too).  I figure that most of you know quite a bit about me, so why not just spill some more....so here we go.  So, as you all know, I have been anxiously awaiting "Aunt Flo" or as my mom calls it "George".  Anyway, she came!  So, her goes my timeline and my anxieties and my thoughts....feedback is encouraged!

I went off cabergoline almost a month ago and was sorta bummed that my period hadn't shown up.  So, i had heard from one of my friends that my body probably needed a good cleanse followed my a good probiotic.  So, I went ahead and started a cleanse called GX assist that I got from doTERRA.  It's basically a natural antibiotic made from essential oils that gave my innards a good scrub.  Two days later I STARTED OVULATING!!!  It was amazing!!!( After the GX assist I did use PB assist which ith is a probiotic that replenishes the good stuff.) Needless to say, I was tickled.  Then less then a week later came Aunt Flo.  (This was about a week ago).  Isn't it supposed to take longer????  It's been years since I cycled, but I thought it should take about 2 weeks...right?  Anyway, I got super anxious and worried that maybe something else is wrong with me....maybe a progesterone deficiency???  So, once I was done feeling happy/worried/anxious/thinking worst case scenarios I thought back on the timeline and decided that if the cleanse is what jump started me then I am probably just fine.  I really think that my cycle started due to the cleanse and NOT due to a build up in estrogen.  Therefore, I would not have as much progesterone in my system and my period would start much sooner than normal.  Does this make sense to anyone but me or am I just making stuff up to make myself feel better???   Any thoughts???

So, I don't want anyone to think I am complaining because I am not....I am SUPER EXCITED to be "fertile" again and I hope that baby # 2 is in the near future.....wish me luck :)

Purity, Testing and Potency of essential oils

So, I've been meaning to address this for awhile, but recently I have had some emails and comments regarding this so I thought I would hit it hard!  These three thing go together beautifully and I will try to explain fairly well :) I did not know how important this was when I first started using oils, but I have been learning a lot about it lately, so I am excited to pass it on.  I will also list additional books and resources at the end to help aid in learning about these things!!!  This may seem very boring, but please read as it is very important!!!

Purity

Purity is huge with essential oils!  It is the most important thing when choosing a brand or company to buy from.  If an oil is 100% pure it means has no synthetics, fillers, chemicals and residual pesticides.  It must have all of it's proper constituents, be grown in it's native habitat and be harvested at the proper time in it's life cycle and season.  There are many many things that can affect an oils purity and therefore how well it works.  Unfortunately there are many oils that claim to be 100% pure therapeutic grade, but are actually 100% synthetic.  Or they may have fillers, or chemicals and/or pesticides that have absorbed into the plant.  Any of those things can cause major problems (allergic reactions, poisoning and etc.) if someone uses them and especially if they use them internally!  How do you know if the oils you are using are truly pure or just claim to be.  Well, it's not easy :)  I have recently learned that smelling and visual examination are not good ways to tell as an oil can be 100% synthetic and smell really really good or look really really good!  The best way is testing.

Testing


There are several tests that oils need to go through to make sure they are really truly 100% therapeutic grade!  The first and most common test is the gas chromatograph (GCT).  Most companies actually do this test which is good, but not enough.  This test determines quantity of compounds but not there origin.  It cannot tell if the compounds are synthetic or natural and it does not test for fillers, pesticides and stuff like that.

The next test is far less common.  It is called the Mass Spectrometry (MST) test.  This test is very expensive and so most companies do not do it.  I know of only 2 companies that do this test and of those two companies only 1 that does it on EVERY batch using an third party to run this test.  The MST takes the results of the the GCT and breaks it down even further.  It can tell if the compounds are natural or synthetic and if there is anything in the oils that shouldn't be!  This test is a must to determine the purity of an oil.

Other tests include Infrared Spectroscopy, NIR FT Raman Microspectroscopy and Heavy Metals Testing.  I won't go into details on them, but they are also tests that are done for purity purposes.

If you want to know if a company does these tests, call them or email them.  I have called or emails a dozen companies and most of the time they beat around the bush or don't respond.  Personally I use doTERRA.  They are the only company I know of that do ALL of those tests on EVERY batch and if they don't pass with flying colors they are shipped back.  I would love to know if any of you know of any other company that does any or all of those tests besides the GCT....I love doTERRA, but I would like to know of any other...just to compare :)

doTERRA actully puts supplement labels on their oils that are ok to take internally.  Plus they say right on them "For aromatic, topical or dietary use" if they can be used for those things.  They have been tested and found pure enough that they can do that!  IF YOUR OILS DO NOT HAVE SUPPLEMENT LABELS ON THEM DO NOT TAKE THEM INTERNALLY!  Here are some pics I just took of my lavender oil :) My Frankincense also has supplement labels as do my clove, orange and all of the other ones I mentioned in my regime (except for Balance) I hope you all can see them ok!  Click on them to enlarge.

 

Sorry if they look kinda weird!  I turned the pics on their side so they would be easy to read!!!  

Potency

Here are a few quick facts.  So, if an oil is really truly pure it is extremely potent.  Because of that you can use less to get the same effect as if you used an oil of lesser quality.  Essential Oils are 50-70 times more potent than dried herbs.  One drop of the peppermint oil I use is roughly equivalent to 26 cups of peppermint tea.  Thats super potent people!  Price point is important to people, so I thought the potency was an important thing to include.  Even though the extra testing means pricier oils, they go a lot further and you will have better results.  Not to mention your chances of negative reactions are greatly decreased.

Additional Resources


Most of my resources are doTERRA specific as far as the oils go, but the other info (such as on purity and testing) that is also found in these resources is pretty global info.

Modern Essentials: A Contemporary Guide to the Therapeutic Use of Essential Oils


Has so much info on oils, their compounds and constituents and how to use them for hundreds and hundreds of conditions.  Lots of footnotes backing up the things they are used for.

   'Frankincense—Essential Oil Library Volume 1' by Dr. David Hill



This book  has so much info on Frankincense in general but also on purity, testing, quality and method of distillation.  Dr. Hill is an MD that is also one of the leading experts on oils.


Everything Essential Website


Just check it out!  Tons and tons of info.

Quick update

I've been on vacation and teaching classes, so I have not been able to post my lastest and greatest.....I had another appt. with my endo.  I got my latest blood results a few weeks ago.  My prolactin is down to 6.7!  The lab technician called me personally to tell me to come back in for a retest!  The initial results were 7.9 and she thought it was wrong "because prolactin levels do not fall that fast!"  The retest results were 6.7 two days later :) I am very happy with these results and hope that my "Aunt Flo" visits soon.  I am currently off cabergoline and plan on maintaining with frankincense and some vitamin supplements I have recently started on!  Wish me luck!  Anyway, I will post more soon and I will post another oil of the week...or month if I keep going like I have been!  Sorry for slacking and a special thanks to those that were willing the share their experience with me via blog and email and even phone!  It always boosts my spirits and strength to hear from others and their experiences...good and bad.  So many of you are so strong and keep going even when things are so hard.  Thanks for sharing even when it is hard.  Thank you thank you thank you!

Share :)

This is gonna be a short post because everyone always hears from me.  I want to hear from you!  I want to know if any of you have had success with your natural stuff, if so, what do you use and how much?  What is your story?  There are people from all over the world that read this blog and I would love some feedback and to know other experiences!!!  If you are too shy to post, feel free to email me :)  I won't share, but I would love to learn from and hear from you!  My email is hyperprolactinoma@gmail.com

Some of you do post, but I cannot view your blog or profile...if you don't want 

me to that is fine, but I'd love to get to know some of you better :)  

(does that sound scary or what!)

P.S.  I would love some good healthy recipes too if you have any to share!!!  

No refined sugar, or milk and whole grains are good!

Clove

Clove is my oil of the week :)  It is the first oil I am rotating into my regime.  I am rotating 5 or 6 different oils into my regime to hopefully increase the results of my prolactin levels and help my tumor shrink even more. I've been taking it for a few days now and I've been learning about it as much as I can!  Clove's major constituent is Phenols and 85% of that should be a constituent called Eugenol.  Eugenol is amazing!!!  It is cancer-preventative, anti-inflammatory and an anti-oxidant.  All these things can help reduce tumors!  Phenols are very strong though and should be used for only a short period of time.  There is a pretty good article I read on Eugenol and Melanoma.  You can find it here.  I put clove in a capsule as it is way too strong for me to take in my mouth.  I take 4 or 5 drops in a capsule twice a day, morning and night.  I also rinse my mouth with clove oil after I brush my teeth because clove is VERY good for your teeth!  If you have a toothache or anything clove will help numb it (or pretty much anything you may need to numb)  It's very good for infections, especially skin infections.  It stimulates the immune system and is a very strong antiseptic  :)  Does anyone have anything to add?  I hope this was informative and not too boring!  Enjoy clove!

Essential Oils convention and eating better :(

I went to an essential oils convention a few weeks ago and learned soooooooooooooooooo much!  I learned alot about hormones, eating healthy and all sorts of good stuff!  I talked to Dr. Hill who is a medical doctor and also one of the most knowledgeable people about essential oils in the world!  I had talked to him before, but I wanted to ask him specifically about my prolactin levels and how they were plateauing.  He remembered me almost immediately (I know he talks to hundreds and maybe thousands of people a month!  I couldn't believe he remembered me as I had met him once several months ago...)  He asked about my baby (oh that's probably why :)  my babe is definitely one most people remember...he's just so cute) and my husband and proceeded to explain that I should cycle in other oils weekly that also have anti-tumor properties, but to keep taking the frankincense all the time as that one is the best.  So, i will be cycling in Wild Orange, Clove, Lavender, Sandlewood, Patchouli, and grapefruit!  As I do so, I will try to write about each on as i do research on them and explain what they have in them that will help me and stuff like that!  This week I am taking clove...so I will do research and fill you in on it :)

So the eating health part....I learned that tumors thrive on refined sugar and milk and stuff like that.  *tears*  I am a steak and potato girl.  I grew up on a farm and I love me some whole milk, homemade ice cream, and just good, homestyle fatty, sugary food!  There is no way I can just turn into some sort of health freak!  (ok, some of you are chuckling right now cuz you think I already am a healthy hippy chick who used oils and wears hemp and chaccos)  well, I do love my chaccos and I try to be earth friendly and pick litter up if I see it, but that is about as far as i go although, I am trying to be better!  (I really want a compost, but that will come once we are remodeled...etc)  Anyway, back to the food thing....if it don't taste good, I won't eat it.  If it don't taste good my hubby won't eat it...end of discussion.  So, here is what I am going to do.  We are going to eat as much raw fruits and veggies as possible (we really love those) and I am going to try to cook and eat mostly whole grains, no milk and cut out refined sugar as much as possible.  I am going to post the recipes that both of us like under a new thing-a-ma-bobber (the tab things at the top of my blog)  That way the gross recipes will never see the light of day and you can enjoy the things we enjoy!  We already have a couple of good ice cream recipes that are delicious!  So, yeah, trying to eat better.  I'll try to keep my enthusiasm for that part of my life safely contained on that new tab, thing-a-ma-bopper!  I don't think it will be too hard!

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.

Stressin over Stress.....

I got my last blood test results and my levels were back up to 141.  WHAT THE?!?  I thought they would decrease for sure after weaning my baby!!!  So, I decided to evaluate and do some more studying....In the course of the last couple of weeks I have learned that stress can play a major role in heightening prolactin levels!  I think I knew this, but hadn't really thought much about it due to all the craziness in my life lately!  In fact, in one of my earlier posts I even admitted that I think stress had a major role in triggering my prolactinoma in the first place!  (See The Beginning????)

In the last few months my prolactin levels has gone from 108 to 130 to 110 to 141.  In fact, April 13th is when it was 108 and April 17th is the day we moved into our new home, and started remodeling.  It's been bouncing around ever since then.  My husband has a job where he works 4 days on and 4 days off.  We remodel for 4 days, then clean as good as we can.  Our house is semi-clean for 4 days then we start all over again.  Needless to say, I do not do well in chaos and our house has definitely been chaotic.  It's especially hard when my baby is just becoming super mobile and I am spending most of my day trying to keep him from playing w/ tools, the holes in the floor, dangerous wires, screws, and everything else you can imagine may be in a construction zone!

 I also have 3 jobs that I do from home.  2 are pretty low stress, because I do them on my own time when I have time and I do it on my own so they are perfect.  The 3rd job involves working with other people and I'm on a strict timeline and it have been extremely stressful for the last few months!  Also, since the beginning of July I have been in a continuous cycle of pack, play, unpack, laundry, major catch up (and never quite getting there), pack, play, unpack, laundry, major catch up (and never quite getting there), etc, etc.  I've been through this cycle approximately 4 times as of yesterday!  Hopefully i won't have to pack again until Sept. 1st.  (Not nearly long enough).  Between all three of them and my full-time job as a mommy, I feel like I am barely keeping my head above water!  We got back from our last vacation on Tuesday and every mile closer to home I could feel my tummy tightening up a little more.

I stress over my desire to have more children.  My cycle still have not returned and I want it to so we can start trying for more babies!!!

Through all this, I have decided that this prolactin thing is a lot like weight loss.  In weight loss, you can't just exercise, or eat well...you have to do both to achieve the desired result.  Likewise, I can't just concentrate on one aspect of lowering my levels.  Frankincense works well, but I also need to lower my stress!  I need to cut some things out of my life!  There are additional things I can do to lower my stress.  I need to exercise daily and I am going to be doing yoga with a friend twice a week.  I am going to drop my photography stuff until I'm done writing the life history (main stresser) is done.  I am going to change my eo regime to include oils that help with stress.  I am going to prioritize each and everyday and try not to stress over my stress :)  Last but not least....BELLY BREATHS, BELLY BREATHES, BELLY BREATHES!

Any other suggestions?????

July is crazy...crazy good!

I love summertime but it is so busy!  I've had a great month full of family, good news, a lot of traveling and camping and trying to play catch up 24/7!  I'm hoping the end of this month will end as good as it started!  I got back from camping late last night and I am going in for blood work probably tomorrow!  I'm quite anxious to see what my prolactin has done since I've successfully weaned Tux :)  I haven't nursed for about 3 weeks now, and my milk has reduced dramatically!  (Thank goodness, I didn't think it would ever happen.)  Since Prolactinoma is directly connected to milk production I'm guessing this means my prolactin is decreasing rapidly!  Since my tumor has been shrinking with my decreasing prolactin levels I will continue to hope that my tumor is shrinking by the minute!  It is so easy to be optimistic in the summertime!  I just looked back over this post and realized I have put an exclamation mark after each sentence :)  or a smiley face....ha ha, it's gonna be a good day!

How can I not be optimistic with this little man with me all the time!  This month he truly experienced the joys of being all boy!!!  The pink water bottle is mine :)  His is green with dinosaurs, I promise!  He loves dirt and mud, bugs and sticks...frogs and snails and puppy dog tail...that's what little boys are made of!

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!

Timeline.....

Just for reference I am going to do a quick and dirty timeline so that I and anyone that may read this can see and maybe give some input on my situation.....

March 2008 - diagnosed w/ 7mm prolactinoma due to infertility.  Prolactin at 70.  Started on Bromo and Clomid.

April 2008 - Pregnant and went off meds.

June 2008 - miscarried and had a D&C.  Went back on Bromo and Clomid.

Nov. 2008 - Pregnant

Aug. 2009 - Had a beautiful bouncing baby boy!  Nursing and on zero meds.

Beginning of Oct. 2009 - Blood tests show Prolactin is at 225 schedule MRI.

end of Oct. 2009 - MRI show my tumor has grown to 1.2 cm.  

Beginning of Nov. 2009 - Prolatin is at 241.  

end of Nov. 2009 - see endo, neurosurgeon and eye specialist.  They recommend for me to stop nursing, go on meds or get surgery.  I decide I want the surgery to just "get this thing out of my head once and for all".

Dec. 2009 - start researching like crazy for alternate treatments.  I start taking Vitex.

Feb. 1st 2010 - Continue my searching and start on Frankincense.   Decide to avoid surgery at ALL costs!

Feb. 13th 2010 - Prolactin is at 201!  Went off Vitex.

Feb. 26th 2010 - Prolactin is at 155.  

April 13th 2010 - Prolactin is 108.

May 6th 2010 - Start weaning process.

June 3rd 2010 - After being off frankincense for 2 weeks Prolactin is at 130.

June 26th 2010 - back on frankincense since 2nd week of June.  Prolactin is at 110.

June 29th 2010 - had an MRI.  Shows tumor at 1.2 cm, but looks different.  Done nursing...mixed feelings.

So, there is my time line.  The way I see it....from the time of my MRI in Oct to the beginning of Feb. I didn't have any blood tests and wasn't on any medication and was nursing (producing enough milk for at least 3 babies) so i have no idea what my tumor did during that time....my questions for my doc are:

-Is it possible it grew during that time and has been shrinking since then?

-What specifically made him think I had surgery since Oct.?

-What does he think in general about my alternative methods of shrinking my tumor?

-What his recommendations are.

Are there other questions I should ask????  I'm sure more will come up.

I got a call from the Doc!

I got a call from the doc!  My mri results are in and (drum roll please)...... My tumor is 1.2 cm!  Now, my first thoughts were not happy ones I will admit.  I thought for sure it would have shrunk and was just expecting it.  I looked over at my husband (the doc was on speaker phone) and he was actually grinning!  I was shocked and mad that he seemed happy with the news.  Anyway, after a second or two of silence the doc asked me a very interesting question.

He asked, "have you had surgery since your last MRI?"

Whoa, hold on....Maybe I better back up a second....Since I broke up w/ my obgyn last November I have been seeing my pediatrician.  When I mean seeing, I mean when I go in for check-ups on my baby I ask him to write me a note so I can get a blood lab done or an MRI.  I have not been good at keeping him up to date on me and my condition.  He know very little about my tumor other than I have one and he has seen my blood results and that is it.  I realize this is my fault and is not a good thing!  BAD SHYANNE!!!!   I forget that doctors can be helpful and can be concerned if you find a good one.  I had such a bad taste in my mouth after the specialists and my last obgyn that I have kept my pediatrician in the dark!!!  (and he is great by the way!)  My pediatrician probably doesn't know what he has gotten into w/ me and my tumor!  haha!

Anyway, back to his question, "have you had surgery since your last MRI?"

I said, "No, why do you ask???"

He said, "Well, it looks different.  It is the same size, but it looks like you have had surgery or something and it has grown back or that it was at one time bigger and been cut back."

I said, "is that a good thing."

He said, "I don't know....we need to talk."  Meaning that I will probably get a cussing for keeping him and all the specialists and everyone else but my blog readers, friends and family in the dark!

So, I set up an appt. w/ his receptionist for next week when I get back from my vacation.  It will be good to see the MRI scans for myself and be able to talk to him in depth now that I have had time to mull over what he told me.

i hate MRI's

Have I ever mentioned how much I HATE MRI's???  They strapped me down after giving giving me two IV's....one unsuccessful the other semi-successful.  Then they had me hold my own torture device (the contrast syringe) and had me hold 100% still as they backed me into "the machine".  After much contemplation, I have decided that once you are in there and the noises have started it is like having someone sit on your chest while you are on your back and having them rhythmically tap you on the forehead while telling you to "name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, "  You can barely think of your own name, much less ten candy bars!

When i was a kid, my uncle tried raising sheep.  I was around 9 or 10 at the time and was the perfect fit for the wool stomping position :)  The attached an 8 foot tall bag to the top of the shed and tossed wool into it.  Once it got about half way full I would hop in and jump and stomp the wool down.  If I was lucky I would pull myself out before they threw more wool in....if I was not, it would come down on top of me and I would feel like I was going to suffocate before wiggling my way above the wool.  Not to mention the ticks!!!  Let's just say that after that, I was extremely claustrophobic and the MRI machine reminds me a bit of the wool bag!

When the annoying, rhythmic buzzing noises are not being made, all I could hear was a noise that sounded like a sick squawking bird.  It was quite disturbing.  I tried so hard to fall asleep, but the IV was bugging me and the table kept shifting so it was nearly impossible for me to take deep enough belly breaths to help fall asleep. Anyway, the overall experience left me extremely anxious the entire day.  Luckily I had both of my boys were waiting for me at home and that helped greatly.....

.....results are forth coming.  I'm really hoping it has shrunk, but as long as it is not growing I will try to be happy!  Considering my rate of growth was quite rapid while pregnant I will try not to be disappointed if it hasn't shrunk a ton.  Plus, I am nursing (well, trying unsuccessfully to quit) and I know it would be very hard to shrink it while nursing.  I really want to get pregnant again in a bit and I don't want to get pregnant until the tumor has shrunk a bit.  My levels were at 110 last week, so they are going down again, but not as fast as I would like.  I guess patience is not my strong suit :)  Wish me luck!

June 29, 2010

Is the big day for my MRI.  It's a huge day for me and I am excited and nervous.  I hope to have Tux weaned by then although I kinda don't think it will happen.  It is my goal though!  The little man makes it so hard!  He loves nursing and so do I!  I've been trying to replace his morning nursing w/ a bottle and it makes him sad and so it makes me sad!  Not to mention it is extremely painful by about noon.  Anyway, I am excited to see what this thing in my head has been doing in the last 6 months.  I need to call my neurosurgeon and get my previous MRI pictures back so we have something to compare too!  I can't wait to tell him about my levels and hopefully the MRI will hold some good news as well :)  Wish me luck....again....

MRI date coming soon!

It is almost time....I am going to get an MRI soon!  I still need to call my Dr. to set a date, but I'm hoping to schedule one before the end of June.  I have mixed feelings about it....I am super claustrophobic and I am not looking forward to the end of nursing, but I have a good feeling about the tumor!  I am sure it is shrinking and I can't wait for this confirmation!  My headaches are gone, I have a lot more energy and I have lost weight.  My prolactin levels are down drastically from February and I just plain feel good!  I'm happy that I can raise my son w/out the debilitating side effects I got from the Bromo and I hope to be able to have more babies w/out fertility meds.  I have a better outlook on life in general even on a rainy day like today...Stay tuned for the MRI date!!!

Results!!! Very infomative....

I got some more results in the mail the other day and I am up to 130!!!  ARGGGHHHH!  I have been off of frankincense for 2 weeks and I am sure that was the problem.  No worries though, I ordered two bottle this time so hopefully I won't run out...I'm going to start stocking up so I don't EVER RUN OUT AGAIN!!!  I feel like I am now a month behind and further away from getting pregnant again.  I don't know that I am ready for that yet (hence why I am still nursing I guess) but when I am ready I want it to happen PRONTO!  I feel like I am getting old and my dream of having 5 or 6 kids is just not going to happen, but I still want 3 or 4 at least and that won't happen if my body is trying to shed prolactin all the time.  The good news is that I am taking the frankincense again and I am going to get another blood test in a couple weeks and hopefully this one will be good news :)  At least I know for sure that when I take the Frank my levels decrease and when I don't they increase....Weaning is going well.  Tux takes two bottles a day and nursed twice a day.  I am going to drop another nursing as soon as I feel like I won't explode!  Wish me luck :)

Well, it's been an interesting two weeks.  I ran out of frankincense a couple weeks ago and haven't been able to order until a couple of days ago.  I've been taking other oils hoping to maintain my progress and keep the levels low until my frankincense gets here.  I went to the lab the other day and requested some blood work to see what my levels have been doing while weaning and w/out frankincense.  Maybe weaning will help keep them lower anyway!  We will see!  I have not felt like my milk is out of control which is huge considering I was out of frank and cutting down nursing!  I pray that is a good sign.  I think the results should come in the mail at the beginning of next week.  I'm crossing my fingers.  If all goes well, I will step up a notch w/ the weaning and Tux will be nursing 50% and taking a bottle 50% of the time.  My goal is to be done nursing by the end of June.  I'm hoping my body will be able to accept that pace and that I will be able to dry up the natural way....I bet my specialists would say that is impossible for me too!  So, wish me luck in proving them wrong!!!!

And, just for the fun of it...here is a picture of me and my babe snuggling :)  Man I love this kid!!!

Weaning....

I have decided to wean Tux. For most people this may not be a big deal, but for someone w/ prolactinoma it can be quit difficult! Since I hate the medications that makes it easy for me, I will not be going cold turkey. I started replacing one feeding w/ a bottle yesterday and WOW....not so fun for either of us! My babe loves nursing and so do I. He's never taken a bottle well and I've always had MORE than enough milk for him and probably another baby to boot! I want my prolactin to continue to drop and hopefully get to where I can get pregnant again w/out taking all the bromo and clomid, plus I want to have another MRI soon and that is much easier when I am not nursing.

Anyway, so yesterday was the first day I gave him a bottle. It didn't take long for my body to realize Tux had missed a meal and I was in a fair amount of pain! I applied peppermint oil (reduces lactation) and gritted my teeth. Tux did not take the bottle right away, it took a half an hour of crying and distraction before he finally latched on. Phew! Hopefully today will not be as bad on either of us....his next meal is coming up as soon as he wakes up from his nap. I thought ahead and have already applied the peppermint, so hopefully that will help and soon my body will get used to this skipped meal. The plan is to cut a meal out every week or every other week until all four feedings are formula :( It makes me sad, but I need to get my body back to normal before the next one can be on his/her way!

Frankincense Side effects

We recently moved and I don't have the internet....so I will try to make up for lost time!!!  Here we go!

So, I've had a few people ask me if I've had side effects from taking essential oils and I will tell you yes I have!  I say how much I hate side effects from meds, but I should be more specific when I say side effects....I should say I hate NEGATIVE side effects. I've never had great skin or a good complexion.  When I was pregnant I loved my skin!  I was pretty much zit free for 9 months!  I keep saying I can't wait to get pregnant again because I love my skin when pregnant, but since taking Frankincense my skin has been a lot more smooth and radiant.  My hubby is constantly raving about it and get this....I pretty much don't wash my face anymore!  I've always done it morning and night as long as I can remember.  The medicated stuff w/ the 2% zit zapper no less...Well,  my zit zapper days are over and have been for about 2 months now :)

Have you ever seen those shampoo commercials w/ the woman who pick up their hair and let is drop strand by strand and it is so silky and smooth, it is almost impossible?!?  I recently decided maybe I should try out for one of those commercials!  My hair is impossibly silky and smooth!  It is about twice as thick as it used to be!  I love it.

Some of the other side effects are more energy than I've had in years, loss of weight, prolactin levels have dropped drastically (from 241 to 108 in about 3 months), I've hardly been sick all winter, and I just feel really good pretty much all the time!

P.S.  Did I mention my stretch marks (or lack thereof)?  Probably not, since I've forgotten that I once had them :)

Prolactin Results!

I got my prolactin results in the mail today!  My doc put a smiley face on this one because I am down to 108!!!!  Need I say more?!?

The Beginning????

So, I watched some very interesting hormone webinars the other day and I learned soooooooo much about different hormone, how they react w/ each other and different things that can help balance them.  While watching them I had a flashback of about 7 years ago when some of my symptoms started to appear (inconsistent periods, weight gain and lactation).  I was living in NYC at the time and it was one of the more stressful times of my life!  I had gained some weight and actually hadn't had my period in about 5 months at this time.  I was living in a tiny apartment and sleeping on the top bed of a bunk bed.  My face was about a foot and a half from the ceiling.  This apartment was poorly ventilated, hot, muggy, and I'm sure I was breathing in all sorts of mold and bacteria every night!  I started getting hives and having breathing problems for the first time in my life and one morning I woke up at 3 am and my lips felt kind of funny....I got up and looked in the mirror.  They were huge!  If any of you have seen the movie "Hitch"  I looked very similar to Will Smith when he had his allergic reaction!  I had never had this happen before and I was pretty freaked out, but I remained calm and went back to bed.  Big mistake!  I got up at 6 am and my lips, fingers and toes were all going numb and much to my surprise...they were huge!  I was itchy all over and the hives had turned into massive welts that covered most of my body!  W/in a few minutes it felt like I was breathing through a straw.  We rushed to Beth Israel and they rushed me into the ER and hooked me up to an IV and started me on steroids and epinephrine.  Once I was out of the danger zone I left w/ a couple bottles of RXs of the same.  I've decided that this may have been the jump start of my prolactinoma problems!

After watching those videos and doing a bunch of research on dopamines, steroids, estrogen, cortisol.  It makes sense that this high stress time and the meds started my body on the journey that I am now on!  I feel like now that I think I have pinpointed the cause, it will help me figure out better how to help myself. I'm very excited about this discovery and will post more soon...

After watching those videos and doing a bunch of research on dopamines, steroids, estrogen, cortisol.  It makes sense that this high stress time and the meds started my body on the journey that I am now on!  I feel like now that I think I have pinpointed the cause, it will help me figure out better how to help myself. I'm very excited about this discovery and will post more soon...

Life has a way of getting away!

This week we have moved back into the house we moved out of a month ago due to the city sewer backing up into our basement.We are still under construction and will be for awhile!  We are all sick and I'm thinking it has to do w/ mold or nasty air in this place!  Can't wait to move and we will be soon because we just bid on a house yesterday at an auction and WON!  We will hopefully be closing and out of this house in a few weeks! Wooohooo!  So we are cleaning, packing, sniffling, running to this bank and that bank.  We are signing papers, putting away winter stuff, pulling out summer/spring stuff, pulling the winter stuff back out when we see the flakes falling.  We are trying to fill our fridge, trying to empty our fridge, going to a friends house to do laundry (our washer and dryer were ruined in the flood), blogging, working, taking care of my baby, attending natural healing classes.  We are running around like chickens w/ our heads cut off trying to get everything here or there and it seems like we are never done!  I've hardly thought about this little tumor that's in my head for the last week or so other than to say a prayer of thanks that March is nearly over and I really didn't get surgery and that I don't NEED to get it right now.  With all this going on I have also been noticing that I have a lot of energy even though my 8 month old has recently decided that he doesn't like sleeping through the night anymore and would rather get up several times a night.  I only get 6 or 7 hours broken up into 3 or 4 hr increments and yet I am not BEAT or EXHAUSTED like I used to be!  I haven't had time to get my prolactin levels checked recently, but I am planning on doing that very thing tomorrow.  Wish me luck!  I'm feeling SUPERB and so I am thinking that means my levels are continuing their downward trend :)  My body tells me it is LOVING me right now and I am loving me some oils :)

I've dodged a bullet...

March is here and half way over and just the other day I realized I was slated for transsphenoidal surgery this month!!!  I can't tell you all how excited I am to have dodged that bullet so far!  And now that I know more about it I truly feel what I have dodged is worse than a bullet, for there are things worse than death!  It seems hard for me to believe that just last November I was pushing and kind of looking forward to the surgery to get this tumor OUT!  I want to have more kids and the Neurosurgeon seemed to think this was the best option since the tumor was pressing against my optic nerves and was close to wrapping around the arteries in my brain.  He thought it would be best to take it out now as complications would be less severe since it was not huge.  "Complications?" I asked  "What might that be?"  
a)1/1000 die or have a stroke.  
b) 1-2% get diabetes insipidus, which will lead to frequent urination and excessive thirst, since the kidneys will no longer adequately concentrate the urine. This can be controlled with a nasal spray or pill form of a medication called DDAVP.  It's side effects include but may not be limited to: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); burning, redness, swelling, or pain at the injection site; calf pain, tenderness, or swelling; chest pain; confusion; coughing up blood; fainting; loss of appetite; mental or mood changes (eg, agitation, irritability); muscle weakness, spasms, or cramps; nausea; one-sided numbness or weakness; personality changes; seizures; severe or persistent dizziness; slurred speech; swelling; unusual headache or restlessness; unusual tiredness or sluggishness; unusual weight gain; vision problems; vomiting.
c)If they take to much it would mean replacement hormones, such as 
1) thyroid hormone, side effects:  Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); changes in appetite; changes in menstrual periods; changes in weight; chest pain; diarrhea; excessive sweating; fast or irregular heartbeat; headache; inability to tolerate warm or hot temperatures; nervousness; pounding in the chest; shortness of breath; trembling; tremors; trouble sleeping; vomiting.
2) coritisol, side effect for short term use: Thin skin, Fluid retention (oedema), Susceptibility to bruising, High or increased blood pressure, Susceptibility to infections, Build-up of fat around the face, chest and abdomen, Thinning of the limbs, Osteoporosis (thinning of the bones), Bone fractures, particularly in the spine and ribs.

Long term Use: Fatigue, Nausea and vomiting, Low blood pressure, particularly when standing up from a sitting or lying position (orthostatic hypotension), Low blood sugar, Shock, Coma

 3) estrogen replacement, side effects:  heart disease, breast cancer, stroke, blood clots, and mammography abnormalities
4) testosterone, to many side effects to list...here is the link:  TESTOSTERONE REPLACEMENT THERAPY

I would be on these and other such things THE REST OF MY LIFE.  One of the long term side-effects of many of those "replacements" is a shorter life span.  As a 28 yr old mother, that IS NOT AN OPTION!  Then to top it all off only 60% of those who have surgery are cured.  The rest have to have surgery over and over and over again!   Therefore increasing the chance of needing these replacement hormones. 


Needless to say, I'm glad I did some research before jumping off that boat!  I still can't believe I was going to go through w/ it!  I'm so glad I found an alternative that is SHRINKING MY TUMOR NATURALLY!  I say many prayers of thanks everyday for this miracle!  

Interesting Info on "normal" prolactin levels for nursing women

Normal prolactin levels in breastfeeding mothers

Typical baseline serum prolactin levels in women		References
Not pregnant, not lactating	< 25 ng/mL	Walker p. 65, Riordan p. 76, Serri et al. p. 575
Pregnant, at term	200 ng/mL	Walker p. 65
Lactating, 7 days postpartum	100 ng/mL	Riordan p. 76
Lactating, 3 months postpartum	100 ng/mL	Walker p. 65
Lactating, menstruation not started before 180 days	110 ng/mL	Riordan p. 76
Lactating, menstruation started before 180 days	70 ng/mL	Riordan p. 76
Lactating, 6 months postpartum	50 ng/mL	Walker p. 65, Riordan p. 76

Per Riordan (2005, p. 76):

• "Plasma prolactin levels increase the most in the immediate postpartum period but rise and fall in proportion to the frequency, intensity, and duration of nipple stimulation."
• " Prolactin concentration in blood doubles in response to suckling and peaks approximately 45 minutes after the beginning of a breastfeeding session (Noel, Suh, and Frantz, 1974)."
• "During the first week after birth, prolactin levels in breastfeeding women fall about 50 percent. If a mother does not breastfeed, prolactin levels usually reach nonpregnant levels by seven days postpartum (Tyson et al., 1972)."
• Prolactin levels "follow a circadian rhythm: levels during the night (sleep) are higher than during the day."
• Prolactin levels "decline slowly over the course of lactation (Battin et al., 1985; Cox, Owens, & Hartmann, 1996) but remain elevated for as long as the mother breastfeeds, even if she breastfeeds for years (Stallings et al., 1996)."
• Prolactin levels "rise with suckling: the more feedings, the higher the level of serum prolactin. More than eight breastfeedings per 24 hours prevents decline of the concentration of prolactin before the next breastfeeding (Cox, Owens, & Hartmann, 1996; Tay 1996)."

For women who have their prolactin levels checked, Burns & Haddad (1998) note: "When drawing blood for a prolactin level, caution should be used so as not to produce an artificial elevation. Since stress can elevate the prolactin level, the patient should rest (but not sleep) before the sample is obtained. Also, the level should not follow a breast examination and should be drawn in a fasting state."

http://www.kellymom.com/bf/normal/prolactin-levels.html

My Healthcare Philosophy

I've been thinking about this topic a lot lately (if you can't tell!).  Another thing I think about a lot is my baby and future children.  So, I am going to try to explain my healthcare philosophy as a parallel to raising children.  Here goes nothing!

Now that I have a child it seems like everyone has an opinion on how I need to raise my child.  Some are kind, others are not.  Some advice is good, some is not.  My baby had a goopy eye a few weeks ago and when I people what to do I hear everything from, "Rush him to the emergency room" to "squirt breastmilk in his eyes".  What I ultimately did was take all the information and study it out.  I did research and then made my mind up on what to do.  Then I sat there for a minute of two and thought over it and once I felt right that it was the best thing to do for MY CHILD, I went ahead with what I'd made up my mind to do.  I'm happy to say he recovered fully and now I know what works for him.

People tell me I should spank my children or I shouldn't spank them.  When a lot of people give me advice they seem to think it is the blanket cure and nothing else will work!  Most schools all teach the same curriculum to the children based on age.  Medications are given to people based on their symptoms as if it is a blanket cure and that most things fall under a certain umbrella.  That may be the case in a lot of circumstances, but what if I don't want "the blanket cure", what if I want my child to have a mix of my parents discipline techniques and my husband's parents techniques or want my own!  Well, my child is my child.  I know him better than my parents and his teachers, his doctors and any behavior specialist, or internet site out there!  I appreciate their advice even the bad advice.  I will take all of it into account when trying to decide what to do in any given circumstance, but ultimately it is my child with his own individual personality and set of circumstances.  He and I will be the one's reaping the consequences of what decisions I make.  Therefore I will attempt to do my best and not stick my kids under the blanket of what is/was right for other kids.  They are not other kids, they are their own individual!

This being said, our healthcare is a lot the same.  There are a lot of specialists out there for every part of our body and mind.  They have the breadth of their experience and education, but they don't have the depth of every individual need ov every person that walks into their office.  We pay them to tell us what they know and recommend based on their experience and education and that is it.  They we can take their recommendations or we can leave them.  Most take the recommendations without any thought.  They do have a lot more experience after all!  Well, that may be true, but they are not us!  They do not know how we feel when we are on a certain Rx and how it is affecting our life!  I want to have many children.  The doctors told me the only way that was possible is Rx's the rest of my life or surgery.  The best option being surgery (quick fix).  Well, I had a knot in my gut when they told me this.  I decided to go to a naturopath.  He had never heard of my condition but said he would look into it.  He cracked my back and I left.  I went back a couple weeks later.  He apoligized for not doing much homework on it.  He cracked my back and I left.  That was the last time I went to him.  I have lots of friends that have different ideas on natural healing.  I listened to them, started gathering information on EVERYTHING I know about it and I connect with other people w/ my condition.  I learn all I can from them continually.   I think of my future and how I want to LIVE!  I want to be there for my children and grandchildren!  I want to have lots of children and I want to be ENGAGED with them.  I want to be AWARE of them and their INDIVIDUAL NEEDS and DESIRES.  I want to be PROACTIVE.  I want to be a good wife and be able to LOVE and SUPPORT my husband in the way he needs.

The options the doctors gave me could endanger my life.  The side effects of that specific surgery could be devastating to me and my future dreams and desires.  It could and probably would shorten my life span.  I would probably have to have it several times as it is not a cure.  The side effects of medications make me groggy, nauseous, stuffy and disoriented and my body doesn't like them.  I'm afraid it would affect my ability to be the mother I want to be.  It would affect my marriage and my wonderful relationship with my companion. I am the only person that knows what is best for ME!  I take everyone's advice and recommendations.  I weigh them carefully, I study them out and I decide what is best for ME!  I listen to my body.  Do I have more energy today than I did yesterday?  Why does this headache feel different than the one yesterday?  Is it better?  Worse?  Ultimately we know and our bodies know what we want.  I go by what I feel, desire and need.

This is my take :)  Everyone probably has their own idea/perspective and that is AWESOME!  The more the merrier.  My advice is to decide what your philosophy is and stick w/ it.  That is my personal recommendation, take it or leave it!