Inability

The inability to try and work things out.  The motherhood stress has impacted what I felt was a pretty solid foundation but as I have begun to unravel the tightly woven web I see things - life differently.  This whole process of being diagnosed with prolactinoma has made me rethink how important life is and how little I appreciate the little things in life that at one time were and still are incredible.  I have stopped with trying to focus all my attention on conceiving.  I have also thought about my relationship and the fact that the emotional support I thought I had is not really there.  Perhaps I am overstepping and should really take a step back.  Nope.  I can't.  I have realized that I have not been supported the way I think one should be.  I am not expecting to be the queen placed on a throne but I do expect that your significant other try to understand that you are doing everything you can but your body is your body and if I could go in there and fix it all - get in line.  I am not saying that he blames it all on me as to why we have not conceived but I guess in some ways he focuses on why haven't we?  Oh and his soldiers are ready for battle - guns ready and waiting although I assume there may not be a captain to push the front forward. Well let me explain myself for the thousandth time that it is difficult for me to conceive.  I am tired of hearing myself.  I would think that with the amount of information that I have provided at some point you would take it upon yourself to educate.  Rather than sound like a selfish individual.  Men.  I sound like some feminist who is pissed off at all the men in this world.  I digress.  I am simply stating that my relationship has suffered.  Part of the reason is I feel the blame is all me and need to realize I am not a fault.  I have done everything in my power to help make this work.  I have.  Trust me.  My significant other has been to the doctor to get a physical but the fertility doctor has not seen his little soldiers yet - which I wanted to rule out all aspects (just in case).  But he will have none of it- "the cup and others knowing what you are doing in there".  Well it's better than a bright light rather like a stadium light casting a beam of light on your WHO WHOO to then have a metal rod inserted which lets to an expansion of the metal rod......fine and dandy until you realize the metal rod was probably kept in a freezer and the doctor is not making you comfortable by discussing what his daughter bought him for a birthday present.  did i mention the size of the metal rod and how cold the son a b***** is.......ugh.  So when another month roles around and my doctor concludes that I am in perfectly good health and perhaps going to a fertility doctor will help with the other aspects that need to be reviewed I suggest to significant other.  He states that we will wait a little longer.  Ah.  Yes, so you question why we are not pregnant yet and then you do very little to ACTUALLY start the process of ruling out the other could be scenarios.  Lovely.  Alright enough of my little tangent.  I understand.  I remain on the sidelines soon to be cheering for the other team who is contemplating whether this is really all worth it.  I know I know.  Pathetic but at some point I wonder if this was the way it was meant to be and finally realize that I need to seek other options if motherhood is something that I cannot live without.  Oh and then there's the relationship that is in obvious need of a oil change and the indicator has been on for the last few months.  Rejuvenate......spa day   ---- perhaps HIS credit card.

Could it be? or do my thoughts get the best of me

Well.  It's now May and I am usually starting my period today or tomorrow.  I have had no sign.  I have had backache on and off for the last several days.  Hot face came yesterday afternoon and lasted until early evening.  My menstrual cycle feels like it's going to start at any moment but there has been nothing there.  I have been running to the bathroom anticipating but "nope".  I took a HPT this morning and it was BFN.  I took one on last night and it was hard to read.  It looked as if there was faint line there but not sure.  I can tell you that these Clear Blue Easy HPT aren't the greatest from my experiences.  I have slight twinges and pains in my lower abdomen but they don't feel like my normal menstrual cramps.  They are very odd.  I have been getting up almost every night to attend to the late night pee.  My dreams have been extremely vivid (in fact I woke up crying yesterday and laughing the day before).  Very emotional.  But I don't think i am pregnant.  I am still not officially overdue on my menstrual cycle since it is so irregular.  I don't want to get excited as many of these symptoms I have experienced from high prolactin caused by my tumor.  Also I am not sure but my body does not feel the usual.  I am keeping my fingers crossed.  I hope.

Increase in dosage

I have officially started increasing my dosage last month to 2.5mg twice a week and now I am jumping it to 3mg twice a week to ensure that my levels go down and stay there.  I had the odd headache but nothing serious.  My doctor did inform me that once we were going to start trying again to increase the dosage as it will only help in decreasing my prolactin.  Self-medicated.   I am hoping that we finally have some success.  I am not sure how other women do this but I know from my experience I become a multi-tasker to try and keep my mind busy.  I know that if I spend all my time focusing on whether I feel like I am pregnant I drive myself to pure insanity.  I have also made an appt for my annual physical, which is now over due and the usual "Am I ready to get aboard the trying to get pregnant train".  I remember when I was younger there was always the fear of getting pregnant as I was in a committed relationship but the timing wasn't right.  Now I wonder what happened along the way.......stay positive.  8)  I do know that there are many couples going through the same experience and have been trying for quite some time.  I do know that my body responds immediately to pregnancy, since my miscarriages, I have determined that I have symptoms of pregnancy immediately.  Lower back pain is the strongest factor as the rest are the usual symptoms of high prolactin.  My doctor was surprised that many of my symptoms of high prolactin usually don't show up with patients with a level of 37-45.  He stated that they are usually significantly higher.  Perhaps I am just one of the lucky ones.  I have been experiencing frequent urination, sore breasts, headaches, tiredness (I mean exhaustion), and all of the those wonderful side effects.  Although, I have noticed that I am no longer producing a discharge out of my breasts - now that is one thing which first initiated me to see the doctor.  Very scary. 

Tips

By the way I have noticed that my periods seem to be between 26-28 days.  Constant fluctuation, how are anyone else's.  If anyone has any new tips for conceiving or infertility, i would love to hear them...???

guilty

Alright. Alright.  I am guilty of not starting the ovulation predictor...Gawd couldn't they make something that requires unorganization.  It might be a little easier.  I have left the box in the kitchen and unfortunately it has not made it's way into the bathroom for my morning testing.  Perhaps I just don't like the idea that once again we could be trying for something that's not going to happen.  Yes, the dreaded idea makes me cringe.  I want to be pregnant but I have this little voice saying "stay positive", while the other little voice says "it's just going to be another disappointing six months".  The problem that I have is that like many women out there my prolactin has decreased so it's officially time to see if I can conceive but there's the check list that follows a) stop all caffeine, alcohol (i like the occassional glass of wine), hubby preparation, all that wonderful sensual stuff.  Ya...I wish it was that easy.  then the doc tells you to be patient and relax.  yup I am all over that.  relaxed.....ummmm...only been trying for 1 year and counting so really what's another six months of dreaded ordeal.  (sarcasm) On the bright side, prolactin is down and the majestic opportunity to welcome me to motherhood.  the thought overwhelms me with joy.  perhaps I am alone on this one but how do you get your frame of mind back to the happy thoughts when for so long it's been nothing but worry and constant failure of conceiving.  Ugh.

Struggle

One of the huge questions I had for my doctor with my recent test results was "Can I get pregnant with a prolactin level of 38"- down from 47.  He indicated that every women is different and there are more factors than simply lowering your prolactin even though that plays a major part.  He also mentioned that you need to stop drinking, caffeine, etc. and start maintaining your body and nutrition.  I have started taking my vitamins again religiously and I have also started exercising again.  I am not a doctor so I cannot say what is adequate for every women.  My first piece of advice is start with an ovulation predictor so you know when your most fertile dates are.  Secondly, cabergoline can be increased slowly if you consult with doctor and your results have not changed research shows - pituitary network association that certain patients will need to increase their dosage ever slow slightly as your body may not respond to the lighter dosage.  Remember I am not a doctor so make sure to consult with your physician.  My physician and stipulated that when I want to get pregnant in the months prior increase my pill by a half to help in decreasing.   I have been trying to get my levels down for almost 2 years due to the simple fact that my previous doctor was not increasing my dosages properly and I was simply sitting on the fence.  Now that I have increased my dosage I have seen significant results in 2 mths.  Many patients have had some success in increasing the medication enough to rid their body of the tumour as I have done some research via the pituitary network association but remember each individual is different and your doctor should okay everything prior.  In addition, we each have different bodies so you basically need to work with what you feel comfortable with and your doctor as well.  I have been very happy with the results lately as I am well aware that my levels are starting to move.  Breathe of the fresh air but you need to stay on top of your medication and health.  I have also started changing my diet.  Less processed foods and more organic and healthier alternatives.  I think that we consume too much preservatives and it can't hurt.  So I am thinking that if my doctor would of increased my dosage several years ago and switched immediately to cabergoline (dostinex) I probably would have had results sooner but they usually like to take baby steps.  I have noticed that I still do get the stuffy nose late at night which my GP doctor recommended I take a reactine to help.  So my daily dosage of vitamins includes the USANA essentials or a multi-vitamin and vitamin B6 (check your dosage of vitamin b6 though I take 50mg a day) as sometimes too much is not healthy either. So the answer to my original question was that every women is different but you can get pregnant with a prolactin level of 38 as I have conceived with a prolactin level of 41 but it's much more difficult.  This is my experience and everyone is different so there is no true answer to the question. 

Pituitary Network Association

Summary of Important Points (Quoted from Pituitary Network Association Website)


Prolactin levels allow the important distinction between a true prolactin producing adenoma and a nonfunctional adenoma with stalk effect to be made with relative security in most patients.

Patients with prolactin secreting pituitary tumors (prolactinomas) should be treated as first line with Dopamine agonist therapy, while nonfunctional or other tumors should not.

Surgery may still be necessary in a prolactinoma and is almost always needed as first line treatment in patients with other functional pituitary tumor types.

Because the hormonal systems of the pituitary are complex, a wide variety of clinical syndromes can be caused by tumors. However, because the majority of pituitary tumors are either prolactinomas or nonfunctional tumors, the symptoms of those two types (menstrual disruption, infertility, galactorrhea, headache, and/or visual disturbance) should raise the issues of a pituitary tumor in patients who complain of one or more elements of that constellation.

The cognitive and psychosocial disruption exhibited by patients with pituitary tumors is real and should be viewed as manifestation of physical disease that can be amenable to appropriately directed therapies.

Although women with pituitary tumors may be diagnosed by their obstetrician/gynecologist, ultimate treatment of such tumors should be carried out under the joint care of an endocrinologist and neurosurgeon

Increase in dosage

I haven't posted for quite some time.  Since the test results I have decided to keep increasing my dosage as my doctor stated that if I was interested in getting pregnant in the next few months I should consider doing.  So I have now increased to 2.5 pills twice a week.  I have noticed that I have been feeling better.  I seem to have more energy.  I guess since my hubby and I will be trying again come May I should start getting used to the ovulation saliva predictor.  I have heard some pros and cons about this type of predictor but as recommendation of the doctor I have decided to try.  It was 100 CAD and what the heck go to town.  The thing that is nice about it is that you never have to buy more predictor indicators for the kit.  So my fingers are crossed for another excursion.  I do admit that I have my negative thoughts.  I hate to have the disappoint again.  The emotional run of trying to conceive is exhausting.  But I will remain as positive as I can. 
We did discuss if this doesn't work perhaps we should start reviewing fertility drugs, etc.  So I know there is one more option after this but I am hoping HOPING that we don't have to go that route. 

Test RESULTS

Sooo...I am happy to say that the test results have come back with a 38 prolactin level, down from 45.  I have started increasing my dosage to 1mg twice weekly and the medication seems to be helping.  My doctor has advised me to increase my dosage slightly since I would like to conceive in the near future.  So I will do as the doctor asks.  I have been complaining about an increase in fatigue which they believe may be a result of the side effects of my medication but honestly at this point I don't care about the fatigue as much as I care about getting my prolactin down.  I purchased a new ovulation predictor (via saliva) which has been recommended to see if I can determine my fertile days.  We will start with that this month and see whether it works.  I am a little happier now that I know the medication seems to be working as we are increasing my dosage.  Fingers crossed - all aboard let's do this.

Exercise

The one word that everyone dreads.  I decided this past summer to start running again.  Although getting up at 5:15am doesn't exactly make me feel overwhelmed with joy the result is worth it.  I live in a very cold city come the winter season and the layers need to be piled on prior to your journey into the arctic wilderness.  Okay so it's really not the arctic but a few of these splendid mornings it sure did feel like it.  (the thought of summer is enough to cause a mental orgasm)  I digress.  So I think this helps to destress.  The dog doesn't mind it either, go figure.  I don't keep track of how far I run or how many calories I burn as I think the most important aspect is to get out there and feel better.  I do.  My legs hurt and I feel rejuvenated.   Now for the other aspect which I noticed several mornings - tender breasts. They friggin hurt like a bastard.  I feel as though I have been punched in the chest.  Time for a good sports bra - highly recommend doing your research rather than buying 6 and then determining.  (as noted - speaking from experience)  In the long run I have noticed that I feel better about myself - granted and I feel less stressed about the everyday issues and hormonal surges I have.  Thumbs up! I would definitely try to have a regular exercise routine regardless but I would really stress that if you have hormonal deficiencies - get on board and get fit while doing it.  I am still trying to locate my cross-country skis - garage is a little disorganized.  I am looking forward to getting out there on those skis as it's been ages (I believe I was 14).  So you may dread the word and the activity but definitely get your butt in gear.

Self Help

Need to start focusing on changing some habits.  Over the last few months my mood is all over the map and I need to start refocusing my thoughts.  I have been "maintaining" my life.  It's been at a stand still for quite some time.  I decided to try the self help books to see whether or not they could help with refocusing my thoughts and perhaps a new perspective on life.  I fully understand that the book itself is not going to help me solve my problems but I am thinking outside the box and what's the worst that could happen.  Exactly- live a little.  So far I have found it to be inspirational and I sampled a few before I found one that was not overly cheesy.  I do believe that I have tried to control aspects of my life but it's just not feasible or healthy.  Prior to my diagnosis I had a love for life and extraordinary enthusiasm.  I always enjoyed going with the flow and never regretted making decisions.  I guess in some ways I still don't but I can't help sometimes to think that there was something I did that caused this obstacle.  Bottom line I don't think I could of changed anything but it's stressful.  SO....... the book has helped.  It's helped to open my life to a new perspective and given me the spirit of life that I have sooo dearly missed.  It's nice to be able to take it off the shelf and dust it off.  I miss the old me and the love of life I possessed.   I would highly recommend grabbing one and sitting back to think outside the box.  I have also decided to start doing things for myself again.  Reclaim who I am and stop focusing on the negative aspect of infertility.  Bloody Hell, life is too short.  One of the exercises in my book; for one moment take in all the good, hold off on the bad and look upon your life and be grateful for what you possess, stop the negative thoughts from entering and realize the what you have right now is pure essence, and enjoy it.  When I took a moment to realize what I had I thought- wow this is pretty darn good.  I felt a release of pressure off my shoulders.  One of the biggest things I realized was that I was the culprit who kept putting the stresses on myself.  I can change that, and it's not my fault or anyone else's.  I am entitled to be happy.  Regardless of whether I can never have children there is something more to life and what I have is incredible.  "The minute you alter your perception of yourself and your future, both you and your future begin to change". - Marliee Zdenek

the new frontier

Well I have started back on the "stay positive" band wagon.  Logically it's the only thing to do.  I am hoping that my next blood test results are better (fingers crossed).  They will increase my medication again if there is no change from the last time.  Not the greatest but the last alternative will be surgery.  As I have heard surgery does not always work so I am a little hesitant to discuss that topic at the moment.  I am looking forward to my appt on the 18th.  (for the recent results) For some reason my conscience believes the results will be better.  Ah- the ache if I am wrong.  I haven't been running as much lately.  I am becoming a little lazy.  I believe that my endurance is not what is was 4 mths ago.  I am exhausted after 3 miles.  Not good.  It might have something to do with my stress level and my inability to quit smoking.  Yes, I am a smoker.  Go figure.  My better half has scalded me because of it and I have no qualms about it, he's right.  I guess I feel that if my levels were low enough, I would stop for the sake of wanting to get pregnant and for the safety and health of myself as well.  Right now though, I am smoking on occasion.  Bad yes, but satisfying for the 10th of a second.  YEsSSSSS!    Now I am sitting in my office wondering and worrying about, well, I am not sure.  Lately, i feel as though there has been this incredible tension between my sweetheart and I.  He gets grumpy quite often about things that he can not change.  I believe that you take it one step at a time and hopefully it will work itself out.  I don't know.  He wants to help but there is nothing that he can do.  He just has to be patient and supportive.  Perhaps I am wrong but I am entitled to my opinion.  "I will wait for you, should I fall behind, wait for me".  Nothing like a little Bruce Springsteen to satisfy your soul.  I definitely need some chicky movies and a good blanket.  Scratch that.  I need a huge comfy bed, a ton of chicky flicks and one heck of a good bottle of wine.  (perhaps 2, but I am a lush).  Did I mention the view from the bed needs to be absolutely incredible.  Dark, windy, warm, ocean, quiet, and absolutely breathtaking.  Yup....daydreaming.....

daily issues

So I have begun to realize that over the past year my inability to stay focused has worsened.  I have difficulty concentrating on simple tasks throughout the day.  8 hrs of work seem like a lifetime.  I have been drinking more and more coffee just to keep myself awake and alert.   Which in turn makes me have significant highs and lows throughout the day.  I am stressed because I was able to multi-task throughout the day and stay focused.  Now I can barely stay focused long enough on one task to complete.  I work in sales so if I don't stay on top of my accounts and clients than we suffer as a team.  I used to contribute long hours when required but that has stopped since the 8hr day is too much never mind 10-12 hr days.  My lack of concentration is something else.  I feel as though I am a child in a Math class learning calculus for the 14th time and my ability to comprehend has diminished and I am now chomping on my pencil with eager anticipation that the clock is going to magically hit 4pm.  I used to love working in this industry and enjoyed the daily challenges.  Now I can't wait to get home and get into bed for a good 3hrs nap.  My bedtime has become 9pm and on some days I am in bed prior to our 9 year old son.  Sad.  I feel rested in the morning but by 9am I am ready for another nap.  The solution, cut back my hours, try and have a cat nap throughout the day (no employer would approve).  My bills need to be paid, and my job is not something that I can leave to the waste side and hope that I can pull through for a better day.  I don't have "better days".  I have been exhausted for 2 years.  My quality of life has changed drastically and I am now looking at any options (Traditional Chinese Medicine) to help cope.  Chinese Medicine is not cheap and insurance doesn't cover it.  In addition, many people do not understand this particular medical issue so they are blind as to what it does to you internally.  I am depressed.  I cry over the stupidest things.  I am very irritable.  My better half states that he feels we are living the life of a 75 year old retired couple.  I am at my wits end.  We have been trying to get pregnant for quite some time- no luck.  My levels have gone up then down then up again.  I feel as though I am on a sinking ship and the rescue boat is not insight.  I sound like a negative sap where I have always been a positive individual.  ouch.  I need to find a way out of this and back into the joy of life.  I miss being happy and refreshed.  I have anxious tendencies now where I never suffered these before.  I get anxious going out to any type of event or even driving to work.  I get anxious when I hear that we have an evening event to attend, because I know that it will be difficult to stay awake.  Naps turn into 3-4hrs.  My appetite comes and goes.  I am overly hungry sometimes and other times I barely want to eat.  My endurance of running every morning has decreased in distance because i just don't feel I have the strength.  I am tired.

Here are some symptoms of a pituitary disorder:

Symptoms of a Pituitary Disorder
Headaches
Depression
Mood/Emotion Swings
Anger
Loss of Memory
Loss of Sleep
Sexual Dysfunction
Lethargy
Weakness in Limbs
High Blood Pressure
Unusual Hair Growth
Eating Disorders (Anorexia, Obesity, Bulimia,Weight Gain)
Diabetes
Infertility
Impotence
Irregular Menses
Lactating

Please consult your doctor.

www.pituitary.org

Prolactinoma
These pituitary tumors (also called adenomas) secrete excessive amounts of prolactin and are the most common type of pituitary tumor seen clinically. Prolactin is the hormone that stimulates milk production by the breasts. Prolactin-producing tumors exist "silently" in up to 5-10% of the adult population. Prolactinomas generally have very different presentations in women and in men. In women, relatively small elevations in prolactin cause irregular menstrual periods or complete loss of menses (amenorrhea), ability to ovulate (remain fertile) and may cause milky discharge from the breasts (galactorrhea). In addition, women may have a reduction in their sex drive. The normal prolactin level is < 20 ng/ml. In most women the tumors are detected when they are small (microadenomas) and the prolactin level is only moderately elevated (30 - 300 ng/ml). In contrast, in men prolactinomas are usually not detected until they are large (macroadenomas), most have prolactin levels over 500 ng/ml. Most men diagnosed with a prolactinoma have some degree of loss of sex hormone production. They may also have visual loss (from compression of the optic nerves or optic chiasm) and/or headache. A minority of patients with large tumors may have bleeding into the tumor (pituitary apoplexy) causing relatively sudden onset of headache, visual loss, double vision, and/or pituitary failure.




DIAGNOSIS



Hormonal Diagnosis



The diagnosis of a prolactinoma is confirmed by demonstrating persistently elevated blood levels of prolactin. A prolactin level of over 150-200 ng/ml is almost always due to a prolactin secreting pituitary adenoma. In all patients with suspected pituitary tumors, a complete pituitary hormone evaluation should be performed. This testing is especially important in patients with potentially large tumors who are likely to have some degree of pituitary failure (hypopituitarism). It is important to note that moderate elevations of prolactin (30 - 200 ng/ml) can occur as a result of several other causes, which must be excluded prior to invoking a pituitary tumor. The most common causes are listed below:



pregnancy or in the post-partum period

stress (discomfort, exercise, low blood sugar)

low thyroid function (hypothyroidism)

kidney failure

liver failure

medications (such as anti-ulcer and antidepressants)

"stalk effect"

The "stalk effect": This may be seen with any disease within or near the pituitary gland and stalk that interferes with the delivery of dopamine (a neurotransmitter) from the hypothalamus to the prolactin secreting cells of the pituitary. Therefore, other types of pituitary adenomas, craniopharyngiomas or other tumors or masses may cause modest elevations in prolactin.



The "hook effect": In patients with very large prolactinomas, the initial prolactin level may be read erroneously as normal or only mildly elevated. In such patients, it is important to confirm that the laboratory performed multiple dilutions of the blood sample to avoid this error known as the "hook effect". When dilutions are performed on such a blood specimen, the actual prolactin level may be much higher.



Imaging



Most prolactinomas can be visualized on both MRI and CT scans of the pituitary gland. Such scans should be performed without and following contrast administration.



TREATMENT



Medical Therapy



In general, the first line of treatment for patients with a prolactinoma is medical rather than surgical. Approximately 80% of patients will have their prolactin levels restored to normal with dopamine agonist therapy. The most commonly used agents are bromocriptine (Parlodel) or cabergoline (Dostinex). Most women also have a return of menses and many become fertile again. The size of the prolactinoma will be reduced in the majority of patients to varying degrees, which often results in improved vision and resolution of headaches.



Bromocriptine is generally instituted slowly to minimize side effects. It is recommended that treatment be initiated with no more than one 2.5mg tablet per day at mealtime. This will minimize the major side effect of nausea and gastrointestinal upset. The dose is then gradually increased over several days or weeks up to a daily maximum usually not exceeding 10 mgs. The dosage is adjusted to achieve a normal prolactin level.



Cabergoline (Dostinex), an oral long-acting dopamine agonist, has been approved by the Food and Drug Administration for hyperprolactinemia. It has the advantages of only being taken twice per week and generally has fewer side effects than bromocriptine. It has also been shown to be effective in patients whose prolactinomas are resistant to bromocriptine therapy. The usual starting dose is 0.5 mg twice per week. The dose may be increased up to 1.0 mg twice per week.



Surgery



Women with microadenomas - Transsphenoidal surgery can be considered as first line therapy in women with relatively small tumors (micro-prolactinomas) that do not invade the cavernous sinus and whose prolactin level is 200 ng/ml or less. In these patients, the long term cure rate is generally as high as 80-90%.



Macroadenomas (men or women)- For larger tumors, the surgical cure rate is generally considerably less. In men with large invasive prolactinomas, it is particularly low, averaging less than 30%. For this reason, dopamine agonist therapy is usually tried first. In patients who present with loss of vision, dopamine agonist therapy is also usually indicated first unless the visual loss has occurred relatively suddenly over a period of one to two weeks or less. For the minority of patients that do not respond well to cabergoline or bromocriptine, surgery should generally be performed within 6 months of starting dopamine agonist therapy. After more than six months of such therapy the tumor may become more fibrotic and more difficult to remove.



Pituitary Apoplexy associated with prolactinoma- Patients with macro-prolactinomas may have acute hemorrhage into the tumor (pituitary apoplexy) causing relatively sudden onset of headache, visual loss, double vision, and/or pituitary failure. Urgent transsphenoidal surgery is generally required for such patients.



Radio-therapy



Because most patients with prolactinomas respond well to dopamine agonist therapy, radiation is indicated in only an occasional patient. Stereotactic radiation is generally preferred over external beam radiation therapy because a higher dose of radiation can be delivered to the tumor with less radiation being given to normal brain structures.

The insanity plea

I am not sure how we get through months of trying to conceive.  I think about how much time is spent in trying to surf the internet to determine whether we have any signs of the early stages of pregnancy....hours, perhaps days, years.  The biggest problem with prolactinoma is your body already has the signs of pregnancy.  It is difficult to distinguish whether these are your usual hormones affected by your prolactinoma or the symptoms of actual pregnancy.  I do believe that I know all the websites that characterize the early signs of pregnancy by heart and I hope as I google more that one of them would have the answer.  It's quite depressing at the same time it's pure insanity.  The more I think about it the more pressure and stress seems to develop. AHHHHHH! yes, I know I do it to myself.  I personally believe it's an act of pure insanity.  I then decide that it's not in my best interests to be viewing these sites and let it be, but there's a little voice inside my head that draws me back.  Especially those little ovulation calculators, birth due date, etc. they should be illegal!  Alright so I am a little freakish.  I guess I am hoping for a miracle, a revolution within my body.  I always think back to years when this was not an issue and I would say to my close friends that I wasn't planning on having children until I was ready.  Ummm, I am ready.....so release the eggs and let's begin.  Perhaps I am just to eager.  Nope that's not it.  I am a driven person.  That being said I understand that if you put effort into something that you would like to achieve you will succeed.  There may be failures along the road, but those are to obstacles you overcome.  You see the light at the end of the tunnel and you can anticipate your end of the road at some point.  Unfortunately I am not in control of this at all.  Well, let's just say that I have a hard time when you can't see the light at the end of the tunnel.  Don't get me wrong- I am positive although it sounds as though I am curled up in the fetal position and refuse to remove myself from the path of the oncoming freight train, but I am.  It has been a year and a half.  I think by now the energizer bunny would of died long ago.  I believe "our greatest glory is not in never falling but in rising every time we fall"- Confucius.  I have a strong belief that there are options and those options may not be the greatest but there ARE options.  Ah yes, I also understand that these OTHER options could have a financial strain.  (Look if you have money to buy a 60" flat screen tv or haircuts for the next five years- I believe you can find a saving jar for the "OTHER OPTIONS OF PREGNANCY".  I will say that I would probably use the money for a nice relaxing trip on the beach or touring Europe.  I believe it will be if it was suppose to be.  I will keep trying all the options, but I really don't know how women deal with all this pain, stress and well....more stress.  We put a lot on to ourselves and why?  It's not your fault.  I guess I can answer that myself because we want that one sweet moment of motherhood to last a lifetime...............

How soon can you get pregnant?

This is always a question when someone is diagnosised with prolactinoma.  I have asked this same question to every doctor.  They all respond with you shouldn't have a problem once we get your prolactin down.  Now here is what I have experienced; When I was originally diagnosised my menstrual cycle was irregular, if any.  When I started taking bromocriptine at a small dosage every night I started having my menstrual cycle two days after I had begun my medication.  I was on bromocriptine for several months with no sign of ovulation.  So after discussing this with my specialist we decided to try the dostinex 0.5mg twice a week.  I started this in April 09.  With in my first 2 weeks I was able to conceive even though my levels had not significantly decreased.  I was still in the 40 range.  One week later I had a miscarriage or what most doctors refer to it as a "chemical pregnancy".  I continued on the dostinex without increasing and this happened one more time.  Most doctors say that 1 in 6 women have pregnancies that end in miscarriage so this was a good sign.  I on the other hand didn't think so.  So we decided to stay with the dosage and maintain this for several months.  My levels went down to 37 then back up to 45 again.  At this point I was ready to try anything.  We agreed to increase the dosage to 1 mg twice a week after I decided to try a new endo specialist.  So far I have not determined whether my levels have decreased as of yet.  I am suppose to be going for blood work again this month.  Fingers crossed. 
So the answer to the question, yes you can get pregnant while on these types of medications.  Now I have heard that some women have been informed to start taking a small dosage of vitamin b6 50mg to help with the reducing prolactin in the body and some have even been informed by their doctor to maintain this through the majority of their pregnancy.  Now this is something that I would consult with your doctor as some researchers believe that too much can be detrimental to your fetus and yourself.  So I am currently taking a small dosage of vitamin b6 to see if this will help.  I tried to locate a high potency vitamin to see whether it would be more effective than the vitamin you buy at your local grocery store.  I have found a couple and found that Usana makes an essential pack that is worth $75.00 cdn (includes shipping).  So I will wait and see whether all of this has results.  I have my blood work this month and my appt is in the beginning of March to review my results.  I am positive but like you know you need to stay level headed.  8)

Vitamin B6- Can it help with prolactin

Here is a little article I read over that I found interesting:
“One reason that women can experience infertility is called a “short luteal phase” or a “luteal phase defect” (LPD). In real life, what is happening is that the interval from the time you ovulate until you have your period is too short. A fertilized egg needs a certain amount of time to safely implant in the uterine lining- if your hormones are telling the uterus to menstruate too soon, the pregnancy will not be able to implant firmly and you will get your period even though you may in fact have conceived.







How do you know if you have a luteal phase problem? Many women assume that if they have a short cycle (less than 29 days) they might have LPD. In fact, I have found that it is more common to have a LONGER than usual cycle- often as many as 40 days. But longer or shorter, the only way to know for sure is to use an ovulation predictor kit or chart your temperatures and cervical fluid signs for at least a month. If the interval between the day of ovulation and the first day of your period is less than 12 days, you may have LPD.






Once you know you have LPD, the next question is how to lengthen your luteal phase. Typically, a reproductive endocrinologist will supplement your progesterone level, which often works. However, I have found great success, supported by all the research I have done, with simple supplementation with vitamin B6.






The RDA or DV of B6 is extremely low- only a couple of milligrams. For this reason, most women assume they’re getting plenty with their multiple or prenatal vitamin. However, the dosage typically needed to correct LPD is between 50 mg and 300 mg daily. I would advise starting out with an additional 50 for an entire cycle (start supplementing as soon as you get your period and don’t forget to chart or use OPKs through the cycle to see if the LP changes). If the luteal phase does not change, or does not change enough, increase another 50 or 100 for each additional cycle until correction is seen. I don’t know anyone who has had to take more than 300 mg- most see a radical change under 200.






So why does B6 work? Well, B6 is a very complex vitamin and has many actions in the body, but the most likely explanation is that B6 lowers the amount of prolactin in the system. Prolactin is a hormone that, in excess amounts, interferes with ovulation and the regularity of cycles. The majority of women that I have talked to encountered a LPD after coming off the birth control pill. Birth control pills cause a deficiency in B6, which can make your prolactin levels rise, which can in turn lead to a luteal phase defect. Supplementation with these large doses of B6 corrects the deficiency and the timing of ovulation hopefully goes back to normal.






Is there a concern about too much B6? B6 is not a vitamin prone to overdose- it is water-soluble and the excess will simply be secreted in the urine. Women who are establishing breastfeeding may want to keep their levels lower, since prolactin is also the hormone that controls milk production, but I have taken an extra 50 mg daily with no adverse affect on milk supply. But the average woman who is trying to conceive should have no problem with the short-term supplementation I am talking about here.






My own personal experience has been two episodes of LPD, both after coming off birth control (once the “regular” pill and once the minipill). In each instance my period has been 40 or more days for a period of four or five cycles, but with ovulation occuring only at day 30 or so. The first time I took B6 I only took 50 mg daily and the cycle corrected instantly- I ovulated on day 14 and got a positive pregnancy test on day 28, and a beautiful daughter 9 months later. The second time (after the minipill) I started with 50 milligrams, but began the supplementation on day 10. There was no change in the cycle, which was 42 days. The second cycle I took an extra 100 mg. Sure enough, I ovulated on day 14. I don’t know whether or not I am pregnant, but I believe that even if I am not, my cycle will at least be regulated at 30 days. I plan to continue the supplementation at the current level until I am pregnant.”

symptoms

The biggest issue I have is the sleep. With having high prolactin levels I rarely stay up past 9pm. My body screams exhaustion. My mood swings are sometimes over the rated charts. It has been years since I can last remember a good night's sleep. I have to laugh when my close friends complain about the pregnancy symptoms. Women with prolactinoma endure these symptoms for years. These symptoms have become a normal part of my life. The tender breasts, trail of blue veins, lower back pain, forgetfulness, and the mood swings. Not to mention the food cravings. Oh yes, I love those chocolate cookies. And the dehydration. I believe I could start referring myself as a sister to the camel species. It's difficult to remember back to the days where I had a "normal" body and "normal" emotions. Ah- I day dream about those days and only wish they would come very soon. Oh and I did not mention that I run to the bathroom so often that I am sure my co-workers believe I have a permanent bladder infection. Drink and 5 mins later - pee. I was happy that I did start my menstrual cycle ( I never thought I would say that ) but I am.

the relationship blunder

Alright we all know that your relationship suffers when you are trying to get pregnant and nothing is working. Even though you have the "supportive conversation" with your hubby and you both try and focus on the positive-you can't. You have that unspeakable thought, what if it doesn't work again. Does this mean that we aren't going to be able to make this relationship work and perhaps I should start following other goals or adventures I thought I would achieve or conquer if I didn't have the family? I asked myself this time and time again. If we don't have children what is going to make us happy. Could we try I.F. and if that doesn't work, what? The questions could keep coming and the answers or shall I say probability is something that I continuously think of. What if? What now? Who has had a positive outcome and how much are we willing to do and the financial aspect (is it something we can afford). I know I sound selfish at times and I hate that too. I think about the fact that we could adopt but then I also want a baby of our own. I guess in some ways I want to know how our child would look and what characteristics would be past on. I just want to enjoy a pregnancy where I am not concerned about whether I am going to make it through the first trimester. Child birth is the least of my worries at this point.

Pure Frustration

Alright I give up. Today is one of those days. A day where you hate every pregnant woman walking. (Jealousy) Absolutely. I am frustrated for the simple fact that we have trying for over a year (mind you my levels have not even come down to try) and experienced several miscarriages. I just ask why. I am still in late 20's shouldn't be that difficult but it is. I am overjoyed for my close friends who now are on their 2nd, 3rd or 4th. I think they are capable of getting pregnant just by talking to their husband where as I (don't get me wrong I love my better half) am stuck trying and trying to discover the ultimate solution. I say that with love but at the same time you start to ask yourself why me? why now? Perhaps we could fiddle with my hormones when I start experiencing menopause rather than when we are trying to conceive. Like when the toilet requires the higher adapter . Ugh. Just saying. Perhaps I just need to vent and communicate with someone who is on the same page or shall I say situation rather than with people who are able to experience the joys of life and brilliance of introducing a new life to this world. Someone who relates with the issues, the drama, the headaches and the overall tiresome struggle. And yes, I am strumming my violin heavily today as I believe it suits the overall mood. Perhaps a thunderstorm and heavy blizzard would bring joy to the mood as well. But I'd rather not be the cause of a state of emergency. I digress. I will continue with my happy thoughts notation. (where ever that may be)

1 year past

It has now been one year past my diagnosis. It has been exhausting. I have a prolactin level of 45 or 47. At this point my levels have not decreased well actually they went down to 37 then back up to 47. I have no excuses. Life must go on and some days I do believe the only solution is surgery. Yet I have heard some that have gone through the surgery and still suffer with high prolactin. When they don't know what causes these tumours (which by the way I have a 2mm tumour located in my pituitary gland) but I have my own thoughts. Researchers have said that birth control contraceptives have nothing to do with these types of tumours or that they believe these tumours are not caused by the pill. I don't know what my believe is but simply that you can't keep putting a hormone into your body for 10 years and not have any side effects. Just my thought. Secondly, I can't believe that what we consume (preservatives) doesn't have an effect on our bodies. All the pesticides that we find in our foods and geneticially altering chemicals that help raise our poultry can't be good for us long term. Whatever the cause may be these are my thoughts.
Stress- ah now this is something that I have a lot of.....who doesn't. We work 8-10 hrs a day, drive home, look after the home front to then try and juggle life's obstacles. We do this consistently and there has to be some repercussions for draining ourselves emotionally and physically. I do belive this only helps with the increase of my prolactin. As many studies show that the more stress you put on yourself the more prolactin your body will produce. Once again this is only my thought.
I originally started taking bromocriptine. It was a small dose and at the very least it allowed me to start having a menstrual cycle again but did not allow me to ovulate. Side effects were apparent and did not decrease with time. I decided to consult my doctor who advised me to try dostinex. Higher dosage. Minimal side effects but a terrible stuffy nose prior to bed time. Now my boyfriend has been disturbed because my heavy breathing at night makes his nights somewhat sleepless. Highly recommend another bed as secondary option for him. Very odd though as prior I know that I was a quiet sleeper. Welcome to the new me!!!! Snoring and all.

dreadful waiting period

Ah. I don't know whether I needed to start pulling out my hair as the phone call could not have come soon enough. I believe this is the hardest part (waiting). Once you have the diagnosis you can begin to weigh your options or treatments. When you are left to your own thoughts the worst scenarios begin to drift in and out of your mind. Nothing can be focused on. The hours feel like days and the days feel like months.

The beginning of the call out

"What do you mean it could be a tumor?" I can just remember my doctor explaining to me that the only other cause of my high prolactin could be caused by a brain tumor. "Perhaps I didn't explain myself more clearly, my issue is with my breasts not my brain". "Ah yes", he states, "but the hormones are the underlying issue." The sudden drop of my blood pressure probably should of sent me to the emergency room, but he assured me it wasn't something serious. Something serious! Perhaps you could take a quick second and reflect on your previous statement of "caused by a brain tumor" and grasp the simple concept that I would indeed believe that this is more than a serious issue. Don't get me wrong my doctor is absolutely wonderful and with his expertise we were able to diagnosis this issue quickly where in the past I have heard many horror stories of not having the proper diagnosis. I left that day thinking what does this mean, and how did it happen. I inquired with my doctor to find out the cause of such tumors he explained that it was unknown. What? Another blank stare shot across my face, why not? Which leads me to believe that I will make it my mission to research.
I was overwhelmed, hurt and extremely emotional. Why oh why? I called my better half to explain that this was the issue, he was supportive. He asked the same questions that I did and unfortunately he was even more confused than I was as to what causes this issue. Next call of course was my sweet mother who right away wanted to gather a research team and start the world wide testing.
So I endured the long and most difficult waiting period in my life for the phone call that would confirm the date of my CT Scan.