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Me & My Pituitaary Tumor
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Me & My Pituitaary Tumor

Hi All,

I was diagnosed with a Pituitary tumor (prolactin) last September. I seemed to be a medical mystery when i started lactating at 13, the GP referred me to a professor it has taken this long to dignose me, i am now 20!

My prolactin levels are over 2000, I have been on cabergaline for a while (1/2 tablet twice a week). They stopped the lacatating and at first, lowered my Prolactin levels but now i am back to lactating and my levels have shot back up. I feel terrible soon after i take the tablet and for most of the following day, i tend to feel very dizzy and my balance is all over the place, very mych like being drunk!!

The dr. im seeing really doesnt seem to be bothered about the tumor at all. I have a blood test every 3 months and a 5 minute appointment with him so i'm not sure if i should be as worried as i am?

I was wondering if anyone could answer this... Will i have problems getting pregnant when i want to start a family?

The Doc will not discuss sugery as he feels this unecessary!!!

Someone help!

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20 Comments Post a Comment
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875426_tn?1325532016
What size was your tumor in September?  Are you scheduled for a follow up dynamic pituitary MRI?  Has the doctor suggested an alternative, given that the medication he prescribed is no longer working?  
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Avatar_f_tn
  I have read that women with prolactinomas have successful pregnancies all the time, but when you are pregnant, the pituitary gland enlarges and prolactin increases, and I believe you have to go off the medication during pregnancy, so your doctors would need to monitor you very carefully for tumor growth, They would not want you to get pregnant until tumor growth is under control, if your tumor is bigger than a couple of millimeters.

You will need to be off medication before getting pregnant, but you won't necessarily have a problem getting pregnant.
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Avatar_f_tn
hi both,

thanks for getting back to me.

My Doc hasnt advised me of the size, will have to find out next time i see him.

i have only ever had 2 MRI's 1st was where they found the tumor and the second was where they told me it hadnt shrunk. I'm not scheduled for another one at the moment, think this is something i am going to need to start pushing for!

So do you recommend the opp? or carry on with tablets? The only problem i have with Cabergeline is that they make me feel dreadfull! some mornings after taking them i can be stuck in bed for hours because it hurts so much to lift my head!!

cheers Guys!

Cerys
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541196_tn?1293556536
cabergoline is in a class that is not known if it has side effects to pregnancy.  The alternative is bromocriptine.  I'd recommend asking your dr. to switch you to that.  It's a daily medication.  I personally haven't used it, but the cabergoline gives me the same side effects it gives you.  

Any good endocrinologist is going to welcome you to get a second opinion from another endocrinologist.  Especially since each tumor is different in each person.  I would recommend you do that.  My prolactin was at 51 when I was diagnosed with a pituitary tumor.  I generally lactate at anything about 15.  My dr. keeps me around 3 with cabergoline.  Today I was up to 10 and she considered raising my medication, but I told her I skipped a couple doses, so she didn't.  (I really did skip a few, cuz I ran out).  

The high levels of prolactin will typically stop your body from ovulating as it's a natural process.  It's just like women who breast feed and don't get a period because of it.  It's possible to get pregnant but not as easy.  High levels of prolactin and a tumor on your pituitary can also cause other problems such as diabetes, adrenal problems, thyroid problems, water problems, electrolite problems, etc.  

Good luck!
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875426_tn?1325532016
Because operating on the pituitary is not without risk and can cause life long consequences (just ask moderator rumpled), I think you probably want to ask about that other medicine Sarah mentioned and give it a try first and see if it doesn't work any better!
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Avatar_f_tn
   Yes, ask your doctor about Bromocriptine. It's been around longer than Cabergoline, and supposedly, the side effects are just as bad with Bromo, but it might work better for you to bring your prolactin down.
Many people choose surgery because they don't tolerate these medications well. Does your doctor feel surgery is unnecessary because medication is available for this type of tumor, or is it because of the size of the tumor?

Ask for the radiologist's report of your last MRI. If your prolactinoma is not shrinking with meds and they are making you unbearably ill, you should see a neurosurgeon to discuss the surgery. For some, it is the better choice.
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657231_tn?1390151580
Bromo tends to have more side effects - so only switch if you have to - I would SWITCH DOCTORS first.

You do not say if you are having periods. If your prolactin is that high, you will not be able to have kids in this state, as your body thinks you just had one. You need to find a neuro-endocrinologist and get treated more effectively. If meds do not work for you, you may need to consider surgery. The surgery does have consequences and if you do not choose a surgeon well, that may impact your ability to have kids - and all that as well depends on the size and location of the tumor which your current idiot has let grow unabated and unmonitored. Your meds could have been increased!

Make sure your MRI is a proper pituitary MRI at a place where they do them a lot - it should be dynamic, with and without contrast. If the place does not understand dynamic, go to another place.
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1315721_tn?1297176923
Hi i was diagnosed with a pituitary tumor a few years ago. I cant remember the size right off but i went about a year without a menstrual cycle and it only took my doctor one appt and he sent me to have the mri in which they found the tumor. then i was sent to my new doc in tn to start cabergoline. i was taking one pill twice a week for a year in which my prolactin level dropped very low and my menstrual came back after a month or two and then he dropped me down to a half a pill twice a week and my prolactin levels have stayed between .2 and 2 i think. i go every 6 months for lab work but havent had another mri done yet. my menstrual started out irregular but has straightened out now. I didnt have any side affects but they say this isnt a big deal and can be controlled and that surgery isnt necessary unless it is so big it cause problems with vision and headaches and such. My papa had this too and it affected his growth hormone, they did surgery on him and he remained on meds the rest of his life. i believe if you have surgery you have to be on meds the rest of your life because the pituitary gland is not gona be able to produce the hormones its suppose too. So if your having bad head aches and such tell ur doc and see about increasing the meds for awhile and if that doesnt help i would consider surgery. But if you can get the meds increased and that works thats the best bet because once they have the tumor under controll it may stop growing and become inactive to where you wont have to take any meds at all. thats what im praying for. i hate taking meds. Pregnancy is possible after the tumor has been controlled.
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Avatar_m_tn
Hi Cerys,

I can't advise you as to the drugs you're taking, but I do have some natural remedies for pituitary imbalance and insight as to pituitary malfunction.  The pituitary gland is responsible for secreting a lot of hormones--the one that stimulates lactation, obviously, and also the one that makes the thyroid function.  So it's an important gland, and it is well worth it to you to seek out the underlying causes of your condition, I think, and to re-balance your pituitary, rather than to just mute the symptoms with drugs and/or (god forbid) cut out the whole gland.

There are foods, to start with, that stop lactation.  At "Whole Foods" or on Amazon you can get an herbal tea called "No More Milk."  It contains herbs, among them parsley, that stop lactation.  Others foods that balance glands (incl. the pituitary) include Irish Moss, Corsican (sold as a tea) and watercress.  The substance called "Royal Jelly," which you can order online or get at Whole Foods or at Health Food stores will help balance the pituitary.  It is the jelly produced by the Queen Bee, it's also good for youthening and beauty, and it balances hormones like no one's business.  

You might check out the "Blood Type Diet Encyclopedia" and use the "female balance protocol" for whichever your blood type is.  Are you A-positive?  I think that is the type that is most vulnerable to pituitary tumors.  If you are "A positive," it would probably also benefit you to follow the A-type diet, which is largely vegetarian.  Chicken and eggs are still OK, lots of seafoods are beneficial, many grains and legumes, almost all veggies and fruits.  You'd have to check out the encyclopdia or or a blood type book for details.  But suffice to say when type "A"s eat red meat, and certain non "A" foods like mangos, papayas, bananas and plantains, brazil nuts, pistachios, cashews, some other unexpected foods, they suffer a bad hormonal reaction--they can develop thyroid problems, weight gain, fibroids, insulin resistance, inflammation etc.  So for my money, you might look into diet as a possible underlying cause, avoid processed foods, and avoid at all costs non-organic meat and dairy, and red meat in general.

Essaic Tea has been known to resolve pituitary tumors.  Licorice and black cohosh can be helpful; hawthorne berry.

Here are a couple brief articles by smart MDs that explain how to heal pituitary problems naturally:
http://www.healthissimple.com/excerpt.
http://www.myvits.com/pituitary/vitamins.aspx

finally, you need a good doctor, one who is really knowledgeable in this area!  Are you in NYC?  if so I would suggest Karlene Chinquee, she is an obstet/gyn and also expert in holistic medicine.  If you're not in NYC, I would look for a good naturopathic doctor, preferentially, or else a really good nutritionist--a truly good one could help you.
all yours,
Rebecca ***@****

Finally, emotional trauma, particularly sexual trauma, at a young age can impair the pituitary gland.  I don't know if that's the case here and am not saying it is--just noting.  A good craniopath can be very helpful because they can realign misalignment that may have caused a pituitary tumor.  Also, tapping the glabella gland (directly between the eyebrows) lightly but firmly, about 20 times, for two minutes, a few times each day, can help because it balances the pituitary.  
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231441_tn?1333896366
Hi,

I have a pitutiary microadenoma and high prolactin levels.  I got pregnant with my first baby while taking bromocriptine. I had to stop the bromocriptine as soon as i got pregnant.  She is now 16 months old.

i am now taking bromocriptine again to lower my levels and hope to get pregnant again very soon.  I am also still managing to breastfeed my baby, even while taking bromocriptine (we are just trying to get levels down to 400 or less).

Pregnancy is definitely possible.  All doable.


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Avatar_f_tn
Hi Guys,

Thanks for all your advise!

I will keep in touch and let you all know how i get on...

Cerys :)
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3241062_tn?1346899470
Hello, I'm a 33 year old woman that is having most of these symptoms mentioned at the moment. I am terrified that when I go into my dr. appt, this week that it will be dismissed and I won't find any relief. The headaches are awful, my breasts feel like cement blocks and the amount of weight that I have put on is making me really upset.
What should I be saying to my doc to make  sure that something is done? There is something wrong and my body knows and shows it.
I've had 11 miscarriages and my current endo didn't think to test my prolactin levels. I knew my gp was on the right track when he included that in the wide array of blood work I just had. And let's say that my levels are high...is it common to start meds before the mri? just to ease the symptoms?
Thank you so much:)
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657231_tn?1390151580
No - it is better to get a pituitary MRI before starting the meds as the meds can make the lesion go away. It is good to get a good quality MRI and get the MRI ordered correctly - a pituitary MRI so it is *dynamic* - so smaller lesions have a better chance to show up. But they should be able to get you in quickly?

Your doc should pick up tte obvious - prolactin and the androgens for sore breasts.

It does take a while for the meds to relieve the symptoms - been there, done that.
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3241062_tn?1346899470
just got back from my gp...and very frustrated. he said that it is normal for a woman who hasn't had children to lactate and to not have a period for 6 months due to stress.. And was reluctant to send me for an mri for headaches. If a person who is hypothyroid and on the higher end of the normal range 3.3-26 for prolactin would they even check out the pituitary? I have made an appt with my endocrinologist,which I probably should have done in the first place. I'm having readings that my sugars are high and that I'm borderline diabetic..I'm sure that's from the amount of weight that I have put on. I'm very frustrated right now mostly from the uncomfortable state that I'm in...any advice?
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3241062_tn?1346899470
I forgot to add that I went from a level of 36 to 16.9 but still having nipple discharge and extreme pressure in my head with no period for 6 months..maybe it's correcting itself? They found a very small cyst on my ovary but that was found a long time ago and I had periods even though there was a cyst up until 6 months ago.
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657231_tn?1390151580
I hope the endo is more helpful... yes, I would hope they would check out the pituitary. In my own case, my prolactin levels were barely elevated to high normal, and I had a prolactinoma myself - and I had full lactation out of both nipples (which I was told was NOT possible - er, sorry! :) but what am I supposed to do?).
I also had another tumor concurrently - Cushing's - which made it more complex.

Try perhaps a neuro for the headache eval - and see if that MRI shows up anything on the pituitary (hopefully you will get contrast).

Given the weight, sugar and all - it sounds like your hormones are really changing up and you need a real work up!
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Avatar_f_tn
I tried taking both of the above mentioned medications for my pituitary tumor, but they made me feel sick and dizzy.  Dostinex is what I take now, with out any bad side effects.  Might be worth a try for other people.
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4850031_tn?1361062518
I advice that you change your doctors. it is not normal for a woman not to have her period or have breast discharge even if she never had kids. this is just a crazy thing to say for your doctor, therefore i advice you get a new one.
i was also diagonosed with micoradonema / prolactinoma 16 years ago. I was on bromocriptin for 2 years at first and then on Dostinex, then the generic version cabergoline for about 8 years.  My tumor was about 4mm but the medication didn't really work. My prolactin was always above 60. Periods were on and off, but mostly off. I couldn't find a neurosurgeon that would operate on me becuase my stumor was soooo small, but the medication was in effective!!! i was desperate at age 26 as i was experiancing most of the above mentioned sympthons.  I was also diagnosed with thyroid issues and was put on Synthroid.  In 2007 I found a doctor in UPMC, Dr. Amin Kassan, that agreed to see me and operate.  The surgery went well, recovery was quick.  However, my prolactin remained elevated!!! I went back on meds, but the same thing, the prolactin would no go down below 60. i'm almost 34 now and TTC, but without cycles and ovulation my only hope is IVF
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Avatar_f_tn
I was diagnosed with pituitary tumor in September by my GP. He referred me to the surgeon. Today, November 4th is my first appointment with the surgeon, the results were not what I planned to here. He said I should not get pregnant as this will cause the tumor to get larger which could result in emergency surgery. Can you imagine hearing that from your doctor? I am feeling so depress, I don't know what to think. Can someone help me?
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657231_tn?1390151580
It does depend on the type of tumor. So, just saying *pituitary tumor* is not enough to know - you have to be under the care of a competent neuro-endo at a pituitary center, get copies of your tests and know your tumor.

Some yes will have issues - and some, sadly will be infertile due to their tumors too. Your doc was pretty much giving you a worst case - I know plenty of people with kids - but some had problems, some complications etc.

You need to know more.
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