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)
Friday, January 29, 2010
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.”
“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.”
Thursday, January 28, 2010
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.
Wednesday, January 27, 2010
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.
Tuesday, January 26, 2010
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)
Monday, January 25, 2010
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.
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.
Tuesday, January 19, 2010
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.
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.
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