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prolactin levels / pituitary tumor
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prolactin levels / pituitary tumor

Just out of curiosity, for those of you with pituitary tumors...

What were your initial readings of prolactin before treatment?  

What else was effected in your body by your tumor?

What are they now and what treatment are you doing and for how long?
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657231_tn?1390151580
You must mean those with prolactinomas?
My initial readings were barely abnormal - about 10pts above normal.
My symptoms besides lactation were: being paranoid, depression, fatigue (extreme), vertigo, bouncing weight (up and down), TSH going up and down...
I was given bromo for a two months and told to ignore it - it was not a factor in any of my symptoms. This was in 1992.
I never got better, but did "dry up". I eventually got sicker, and then found out in 2004 that the tumor they initially saw was Cushing's and another tumor that was not seen was a prolactinoma.
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Avatar_f_tn
Hi - My docs think mine is not causing my problems. That said, back in 2002, my prolactin levels were 3 points high (on another post I said 1992 but meant 2002)  and as I recall at the time I had veritgo which came in episodes, depression, period was always abnormal from the beginning. My readings of prolactin when I went and saw the endo was within range. I had a headache every day which is what made me go to the doctor and up to that point it had been Nov 2007 thru March 2008. Interesting point...headache is in exact area (right side) where tumor is......hmmm.
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Avatar_f_tn
My son's prolactin level was 50. The "normal" range is supposed to be between 3 and 18 for his age. The docs don't think he has a prolactinoma, they think it's a  Rathke Cleft cyst or possibly a craniopharyngioma.
However, I believe his pit. tumor was caused by estrogen dominance, from soy phytoestrogens in his soy infant formula, not to mention all the soy food he ate for 10 years.
Estrogen dominance causes prolactinomas. In fact, scientists use estrogen to deliberately induce prolactinomas in rats, for studies.
I read a few years ago that adequate PROGESTERONE therapy can prevent and even REVERSE prolactinomas in women who are estrogen dominant. If this is true, then does that mean testosterone therapy for my son might reduce his pituitary cyst, if it was caused by soy estrogens? I don't know. I don't believe his endo would go along with a trial of low dose testosterone to see if it makes a change. They don't believe my soy theory, but then , they're not doing the research I've been doing.

If I had a prolactinoma, I'd definitely want to try the progesterone therapy.  :)
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541196_tn?1293556536
Thank you.  I was just curious, because after reading a lot of internet articles on prolactinomas I noticed a lot of them only suggest tumor if your levels are above 100.  However, mine were at 50.5 when my dr. tested them after 4 weeks off birth control (the birth control supressed mine somehow)  She did think that level warrented getting an MRI, even though my MRI only showed my gland as "prominent", no tumor was actually found.  I started Dostinex/Cabergoline once per week about 5 months ago.  Since then my prolactin is about 1-3 each time I get it tested.  

Since being diagnosed with this... they have also found type 2 diabetes, hashimotos, high blood pressure and I have a severely weakened immune system.  They are currently checking for adrenal issues as well.  I am also treated for depression/anxiety.

I was mostly just curious of the levels of other people since I read all these articles suggesting 100-200 was the magic number for prolactin producing tumors.  
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657231_tn?1390151580
Ah... yes, that is why mine was called incidental - my labs were not high enough for mine to be a prolactinoma, therefore I could not have a prolactinoma ever, and they even said it was impossible for me to be fully lactating (er, tell that to my body!). There are some docs that want to go by the numbers and even some that will not diagnose some conditions unless you reach the top of the range x2 or x3! Crazy!

They fail to see after a while that the endocrine system is really a system - and that when one thing is off, well, one person may function fine and may only have that one hormone off and the others may be fine. But another person, well, that just may be the tip of the iceberg and they are not finding the real source. I was told I had a thyroid problem. That was it. In the end - my entire endocrine system - except glucose, was not functional, but they could not see it. Since what most doctors test for is glucose, they felt I was fine and my jumping around thyroid was felt to be non-compliance on my part (it was not) or some other fault of mine. Instead it was a sign of pituitary issues.

There is no magic number. Wish there were some magic doctors.
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Avatar_n_tn
35 years ago at age 32 I was diagnosed with osteopenia, low leutinizing hormone, low testesterone, low thyroid, high prolactin of 100/(2-10) and 'empty sella', which means the normal pituitary image inside the bony pituitary-containing sella is not there and the sella is filled with a tumor of different density than the pituitary, or with spinal fluid.  My mds said they would not operate until xrays showed 'suprasellar' extension - somethng growing thru/past the sella wall - or until I showed 'bitemporal' vision problems, neither of which has presented.

My lifetime has been wasted with temporizing treatment of symptoms and non-existing ailments, but now my 30 plus year old children are very prematurely showing osteopenia and may be about to embark on the same decades long wasted journey I took, so we have agreed that before any of us will treat yet another possible symptom (secondary bone loss) with fosamax/alendronate that we will rule out hyperparathyroidism as the cause of the bone demineralization, and are doing repeat PTH, calcium, ionized calcium, phosphorus and urine calcium tests at PrivateMD Labs.com, at our own expense, and delivering the lab reports to the previous MDs and some new MDs.  Amazing that MDs don't think along these lines.

My varying prolactin levels over the years, and reports I have regarding multiple-endocrine-neoplasia cases, suggest that the "PPP" tumors, pituitary-parathyroid-pancreatic, may be sporadic, so waiting years for a lab result to trend higher, or in my case waiting for pituitary xray evidence or vision problems to develop, could cause you to miss the diagnosis completely, which is exactly what my 12 MDs over 35 years have managed to accomplish.
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Avatar_f_tn
can a  pituitary gland cause all the joints in your body to hurt like a toothache all the time?severe pain started after flu in jan 2008
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Avatar_n_tn
Yes, a problem with the pituitary gland messes up all the other glands in your endocrine system.
Pain and stiffness in joints muscles and bones is just part of the general bodily disablement that increases the longer you go undiagnosed and treated.
If you are concerned, Get to a sympathetic doctor immediately, and get an MRI scan.
Good luck.
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Avatar_n_tn
I have a pituitary tumour (prolactin) which has been growing for several years.  It started out as a microadenoma but is now an adenoma.  The last time it was checked was about 5 years ago when it had grown from 3mm to 11mm in 8 years.  I can't take the medicine because it caused extreme, extreme head pain and they say it's too dangerous to operate.   Have all kinds of bad things happening in mid age - severe osteo, double vision, cancer, extreme light sensitivity, broken bones that don't heal for months, chest pain, very poor immune system, and so many other things.  Guess I will  die from it because there's nothing they can do.

I also don't understand why hands and feet are much growing bigger (even though I've lost weight) and have fat around face even though the tumour doesn't produce that kind of hormone.  

One thing I did learn about tumours caused by prolactin is that just because your prolactin level doesn't rise, it doesn't mean your tumour isn't growing.  The tumour can grow quite big while your prolactin level will remain exactly the same as it was when it was small.
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541196_tn?1293556536
Have you sought out different Dr's for opinions?  I think it would be much warrented to get a FULL panel of blood tests done... a new Tesla 3.0 Pituitary MRI with/without contrast and take those results to a handful of different endocrinologist... specifically neuro endocringologist (ask them what type of endocrinology they specialize in... if it's not pituitary, move on).  Also see a neurosurgeon.  

NeuroEndo's can usually be found at a local university hospital.  They seem to flock to those. :-)
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875426_tn?1325532016
You might want to look into acromegaly regarding bigger hands and feet.  Why haven't the doctors referred you to someone who could remove the tumor?  I had an acupuncturist who had a sister who had a large pituitary tumor removed that was causing headaches.
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899531_tn?1241881150
Hey Sarah:

My prolactin level was 466 on the first draw and 412 two weeks later.  I am on cabergoline - but I have not noticed a big difference in my symptoms.  

My tumor is 11mm.  I am exhausted and have a headache that never goes away.  My vision is blurred and I was hoping that the cabergoline would make a difference quickly.  I have not noticed a difference as of yet.

Good Luck!  Also Julie - have them check your growth hormone.  If that level is high you can die.  I hope you get some good help.
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Avatar_n_tn
When I was diagnosed in 1999, my prolactin was 115.4 and my MRI showed pituitary microadenoma at 8mm. Now, 10 years later and on cabergoline 2x per week at 1/2 of 0.5 mg (1 pill per week), my prolactin is down to "3" and my pituitary microadenoma is 3-4mm.  When I was initially diagnosed, I felt very tired and had a "vibration" in my body.  I felt terrible.  My gynecologist discovered it--not my internist who ran all tests but the right one!  Now, I have a new endocrinologist who wants to mess with the medication levels and take me off it.  Thanks, Rumple!  I agree--find a new doctor which I intend to do.  She doesn't have enough experience with this to know.....it's scary.
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596605_tn?1369950227
Hi my levels of prolactin were just around 200. I was diagnosed with a prolactinoma.

I did not do well on the dopamine agonists.

Long story short I had surgery and it ended up being a Rathke's Cleft Cyst, per the pathology report. I also had low growth hormone levels, low thyroid and elevated testosterone prior to the surgery. My growth was ~6mm.

It's been three years since surgery and I still have slightly elevated prolactin levels (60-70) because there is stalk damage which makes it so that the inhibitory hormone is not fully getting through from the Hypothalamus.

I am now panhypopituitary and have Diabetes Insipidus, GHD, low cortisol, low thyroid etc. So I now replace what I no longer make.
Horselip
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1064927_tn?1263567199
Hi SarahB79,
My prolactin levels were at 207 when first diagnosed back in 2001.  Now, prolactin levels are still elevated...last weeks test showed my levels were at 90.  Still elevated and yes Im on meds.  I suffer pressure headaches, vertigo, weight gain, thyroid, and a few more endocrine problems.  My tumor has decreased in size using Cabergoline and now Bromo... It is 3mm x 4mm in size and is considered a prolactinoma.  Because my tumor has hemorraged, I am currently scheduled to have surgery the 14th of this month...in a few more days (YIKEs).  Hope this info. helps...take care :)  
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Avatar_n_tn
Before I was diagnoised with a prolactinoma tumor. My only symptom or sign of it was that i was producing breast milk. So I thought I was pregnant. Went to the doctor because I had failed several pregnancy test. They ran a pregnancy test and I failed that one too. So they ran a blood test on my. That is when they suspected i had a tuomr. Normal levels for my age was around 25 and my levels came back at 48. So the next step was to do an MRI. And when that came back it showed a 3mm tumor. After that they tested me to see which kind of tumor it was. And of course it came out to be prolactinoma tumor.
I am not sure if it affected my period because I was birth control which was supposed to make my period light anyways. And my period has always been irregular.
  I was diagnoised about 1 1/2 ago with my tumor. I am on calbergoline. I take the lowest dosage possible because my tumor is responding to it with lowering my prolactin levels. I had another MRI done this past year and it has not shrunk. So the course of treatment for now is for me to stay on my meds. I can have a kid whenever i want even though it will be high risk. And every year i will get my blood tested to make sure things are normal. And a MRI to make sure the tumor hasn't grown and hopefully maybe it will shrink. Another thing that my eye doctor is doing is testing my periphal yearly to make sure the tumor isn't hurting my vision. As I have been on my meds my periods have become more normal and regular. So it is helping my body. My pituitary doctor said i would most likely be on my meds for the rest of my life. There is a chance that my tumor could go inactive and i won't need treatment. But she doubts that it will ever shrink. Which was sad news for my husband and I.  
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Avatar_m_tn
Hi I have prolactino tumor detected a year back thru MRI and when i'd skipped my periods. My tumor size was 5mm them and i was prescribed carbogoline . My count them was 110. After a year my MRI showed very less improvement (from 5 mm to 4 mm)but my count is 5. I am getting blurry vision again followed bt sever headche. what shall i do to handle this blurred vision and headache? I get scared while driving. Pls suggest.
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657231_tn?1390151580
Go see a neuro-opthomalogist and get a good thorough exam.

Is your endo a neuro-endo, or a regular endo? Have you tried both medications, or just one? Have they tested all your hormones?
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Avatar_f_tn
My prolactin levels were originally about 4 months ago at 270, since then they have come down to 58, and I have had 2 periods since...eventhough the gyne says I will never have a period,cause the levels are way too high....so now Monday I am scheduled for an MRI...can someone have extremely high levels, and come down to 58 and have periods and not have a tumor????? This topic is really confusing for me,cause I should not be having cylces and well I am....

Dazed and confused.....:)

Thnx
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Avatar_n_tn
Sarah, thanks.  I didn't realize there were different types of endocrinology they specialized in.  I thought it was all one field for everything.  By the way, they diagnosed mine as a pituitary tumour (microadenoma) when my reading was only in the 50's.  It's now 120.

Bone problems are of concern because I have extremely severe bone problems now.  Will likely be in a wheelchair within the next year or two at very most.  Did see an endocrinologist as well as a brain surgeon but they said they couldn't take it out because these operations are extremely dangerous and/or deadly.  Depends on "how" it grows from what I gather.  I don't know the real size of it now because I've been waiting several months for an MRI but at the rate it was growing i the past it's probably about 1.7 cm from my last test 5 years ago.

Re your comment about the acromegaly SurgiMenopause, I did mention that too.  They didn't believe me though, saying it was only a prolactinoma.  I also developed big brown spots on my face and had some gaps in teeth filled.   I did find out on the Internet though that you can have both a  prolactinoma and the acromegaly at the same time.

These tumours can be extremely serious, no matter how small.  Even when mine was less than 3mm and the reading below 50, it caused such serious damage to my body that I got menopause 10 years early.   That's right!  Something that tiny can throw your entire system off very severely, and that was just the beginning!   As it progressed I got sicker and sicker and heavier and developed worse vision and headaches.   I also got really stressed and finally my immune system broke down and about a year later I ended up with cancer (which is especially bad with a prolactinoma because this type of tumour causes breast cancer to head directly to the lymph nodes).

My doctor was monitoring it carefully but didn't know what to do after the surgeon didn't advise operating and I was allergic to the Bromocriptine.   It took ages to develop the nerve to try the Dostinex after such a serious reaction from the Bromocriptine but finally I figured that if I didn't do it, I would die.   I was getting more and more crippled and my vision was deteriorating to the point where it was really scaring me to death.  I also developed some heart problems.  I've only tried the Dostinex (1/4 strength for a few weeks now but it seems to be working out fine so far so I'm ready to gradually increase it to 1/2 strength now.
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Avatar_n_tn
Brain Tumours and the SV40 Monkey Virus. - Might want to do a search on that too, for everyone who got the polio shot or the red stuff on sugar cubes in the late 50's or early 60's.   Millions literally had the SV40 cancer-causing monkey virus put into their bodies from this polio shot or sugar cube.  That's 40 different monkey viruses!   Today about one out of every five people has a pituitary tomour ad they claim they don't know what causes them.  The worst thing is that once this virus is i your system it gets passed on to your kids at birth as well, and theirs and so on.   One of the best books I read about this was Dr. Mary's Monkey by Ed Haslam.  It starts out talking about Kennedy but then gets more and more interesting as it goes on.
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Avatar_f_tn
My husband was diagnosed with Prolactinoma in late July.  His initial Prolactin level was 2800.  He started immediately on Dostinex, beginning at .5mg/twice per week then gradually working up to 2mg/twice per week.  After 6 weeks on the medicine, his Prolactin level was down to 145.  Still extremely high, but something is working.  He also has extremely low Testosterone.  Initial T level was 92, 6 weeks later it was 125.  Because of this, he has started on Testosterone injections of 100mg every other week.  

We are anxious to see some changes in weight.  Over the years, he has battled his weight and has not lost any in the 8 weeks that he has been on treatment.  Can anyone give some advice on when we might see a change with weight?
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1496800_tn?1288902060
Im not sure where to start.
This is the first time I've posted in a forum.

In April 2010 I was hospitalized for a period of two weeks because I was having seizures. Weakness in my legs, vertigo, headaches.

I was diagnosed with Hypothyroidism. My TSH levels were at 4.8 in September of 2010.

Since then, I've become "worse".
I've been experiencing chest pain & discomfort, heart palpitations of all kinds, hot flashes, my weight yo-yo's, I'm lactating milk {have been for a few years now, despite that I haven't been pregnant or had a baby in the last 5 years}. I suffer from insomnia, fatigue, weakness, I tremble, have cold intolerance, shortness of breath, hair that feels like dead grass, irritability, headaches that could kill a horse, my vision is blurry, anxiety and well the list goes on.

So my doctor did a physical and found that I am swollen in different area's that were sensitive to her wandering and pressing hands.

She said some of my organs are retaining fluid.
She saw the "lactation", addressed that it sounds as if I have a pituitary tumor and had a lot of blood tests done.

All of which, just came back "normal" how!?
What's the next step?
Do I need a different doctor? an Endocrinologist instead of using my primary physician? Will a cat scan be done anyways?
She said my tumor, is a non functioning tumor and won't cause any problems. How is it a non functioning tumor if it is producing hormones which are causing me to lactate? How will it NOT cause problems when it already is? I want it removed! Im sick and tired of feeling so sick and tired all of the time. Im 26 and a mother of 4, I don't have time to be knocked down.

What do I do?
HELP!???!!!
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Avatar_f_tn
You need to see a neuro-endocrinologist. They have much more experience with pituitary issues.
How much thyroid hormone are you being prescribed? Are you getting thyroid re-tested every 2 to 3 months? You should be. Hypothyroidism can cause fluid retention, and it can take a very long time to get back to "normal" on replacement hormone.
Have you been tested for iodine deficiency? I have been reading about this. Iodine deficiency is very widespread and can cause all of these problems.
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1633698_tn?1300027461
hi
my prolactin level is 75 ng/ml , and i dont have any symptom , and no milk
iam 21 years old , not married , is this risk? i dont visit the doctor, please respond me
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1611319_tn?1378621999
Hello to all.  I have had two pituitary tumors.  1987 & 2005.  Both times my prolactin levels were always normal.  My last tumor was remove by an excellent neurosurgeon in Houston, TX that specializes in Only Head and Neck, with another specialty in Just Pituitary Tumors.  This doctor travels to other countries to do the tumors that other neruosurgeons will not touch.  There are many doctors that have very detailed specialties, but you have to look for them.  They are going to be in the bigger cities and sometimes you have to wait to get in, but in most cases they are fairly quick to get you in.  My first nero was one of those reluctant surgeons that wanted to take the "let's put it on the back burner" approach.  Just because your Endo or Brain Surgeon tells you to wait or it is too hard or dangerous does not mean that has to be your only option.  Sometimes they just don't feel qualified but do not tell you to find someone that is.  Ego!!!!  Please for all of you that feel hopeless do not just quit or quit looking!!!  A Tumor on the Pituitary can be life threatening or can leave you devasted with Thryoid, Adrenal, Endocrine Issues as well as risk your eye sight.  
I know these things because ironically, my mother-in-law had an undiganoised pituitary tumor that almost killed her and did cause her to loss her eyesight in her right eye completely.  We had no idea what was wrong with this healthy, vibrant woman.  Her tumor burst and she bleed out into her brain causing excrutating headache, central nervous order symptoms, frontal lobe damage, and the loss of her eye sight in her right eye.  She went undiagnosed for another 9 days, in a coma, with every doctor in a major hospital unable to have an idea what was wrong.  These were the specialist!!!! Endos, Neurologist, Neurosurgeons, Internist, MD's, Every Specialist in Our fairly Large City... I had her transferred to Houston and she was awake and had the reason within 12 hours.  This was in 2001.  

These surgeries are fairly routine to a qualified Neurosurgeon that has the experience.  My Nero also travels around training other Neuro Brain Surgeons!!  My surgery in 2005 took approx 5 hours , with a recovery time of 8 weeks.  I just had another MRI and am still clear at this time.  I have multiple endocrine issues now.  Could be because I had the second on for an extended time.  

I have the dizziness, double vision, pain over the entire body, hands and feet getting bigger, weight gain, esphogeal problems, high high blood pressure, swollen lymph nodes, dry skin, hair like straw, dry eyes,mouth,nostrils, etc etc, and I do NOT have a tumor at this time.  I tell you these things because I want you to be aware that other issues can cause these problems.  Your autoimmune system is one red flag, Hasimotos ( I have) is one of these as well a Sjogrens syndrome (possibly have).  Have your doctors check your endocrine system completly.  TSH is not a good indicator.  They did only my TSH for years and "everything looks good to start you on a small dosage to now large doses" All the while my Thryoid died.  waiting on Ultrasound to see what these growths are.  You need the whole Panel run....T4 Free, T3Free, TPO, etc....Vitamin Panels Run.  All these things can extremly affect your body and the way you feel..  If only I would have followed my surgeons advice and found a gooe neuro endocronolgist.  Maybe I wouldn't have all this pain and problems.  But There is still lots and lots of hope for me.  I am getting better and expect to have more improvements when we get my meds on board.  Until then trying to help others is my mission.  Feel free to ask me any questions.       -sass-
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Avatar_m_tn
I was diaganosed with a macro prolactanomia in Sept 2009 and my levels began in the 260's.  I started out taking Bromocriptine and could no longer tollerate the side effects.  Switched to Cabergoline on Sept 2010 and in Nov my levels were normal. 4 months later they have gone back up to 190's even after med increase.  Looking at possible surgury but Endo says lets give it a few months and see if the prolactin levels out.  I'm sorry, but if my meds are increased and my prolactin keeps going up, why on earth would the prolactin "level out"?  Makes no sense to me.  I go again the middle of the month and we will see whats going on from there.
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657231_tn?1390151580
I suggest you get another opinion. I think your instincts are correct.
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Avatar_n_tn
Wow, that's quite scary.  Mine dropped over 100 points within just a few months of Cabergoline and I felt fantastic!  I'm not sure why yours keeps going up.  High prolactin for long periods is also very dangerous in the event that you should develop breast cancer because it can cause it to spread through the lymph nodes.   So have you heard anything further?

I stopped taking the Cabergoline a few months ago but don't know if the tumour shrunk.  It was the same size still at the last MRI  but my doctor suggested quitting it for awhile to see if the prolactin would go up again.  I'm not sure that I should've stopped but the directions that come with it aren't clear as to how long patients should take it.  They can't get MRI's every couple of months.

I have been gradually feeling more sluggish though since I did stop.

To the person who asked how long it would take before weight loss tarted, it won't start until the drug can keep you awake long enough to finally enable you to start building your muscles again.  I was horrified at how much mine had deteriorated when the prolactin was high.  They had almost withered away totally because I could never stop sleeping.  That was the only thing I ever thought about. .  

So when people take the Cabergoline, the weight loss won't happen right away.  You can't lose weight until you start building muscle and you can't build muscle until you are able to sleep for no more than 10 hours a day!  So once you can stay awake, it will take you at least three months to even begin to build back your muscle again.

Since I stopped taking the Cabergoline I'm worried that I'm falling into the heavy sleep pattern again because I get so tired every couple of hours that I now have to lie down for about 20 minutes every couple of hours, so I suspect the prolactin level is climbing again.  In the meantime I had lost 30 pounds in the last 8 months or so without even trying by simply "being awake."  My desire for sweets also lessened and I wasn't as  hungry.

Oh, and another thing I would like to warn people about is coming off of the Cabergoline suddenly.   For about 3 weeks I was "extremely" depressed so I wouldn't recommend that anyone just drop it cold. While I'm now over the depression, I still want to go back on it again, because the sleeping is scaring me and suggesting that the prolactin might be going up again.

You know, that could be the problem with so many of those young people who rely on energy drinks to stay awake as well.  Since one out of every five people has such a tumour, those types too may have one and be treating it with entirely the wrong thing.  And there's nothing worse than "working your body" when you feel like fainting all the time.  It's hard on the heart.

Regarding someone who mentioned low testosterone, that's not at all surprising because I believe it's the high prolactin itself that wipes people out so badly they feel too tired to do anything, and at times for me, even 'breathing" seemed like an effort.  I just felt so weak!

To the young people out there who have high prolactin levels, especially if your periods have stopped, make sure  you get the Cabergoline right away.  I didn't and now have advanced degenerative disk disease and yes, I got cancer too.  When your body is always weak and tired it can't defend itself.   I have a lot of high regard for that drug even though it is roughly $20 for each small dose pill (in Canada).  The really nice beauty of it is that it only has to be taken once a week.

This drug is also called Dostinex.  For those who believe it will enhance their sex drive, I believe that is false.  It didn't do a  thing for me.  I think the only thing that will enhance sex drive is high energy and good health.  Some people with  pituitary tumours may find it difficult to get either one of those back totally again for quite some time, especially if they have had high prolactin for a long time.  It may happen but it won't be for a long time if you have developed a lot of bad symptoms over the years and have become quite weakened.  

It wouldn't surprise me if many people with pituitary tumours also ended up divorcing as I did, because a total lack of sex drive and energy is often upsetting to the partner who often feels unloved.  It's very hard for them to understand just how much this can wipe already very weak and tired people out.  As a matter of fact, I don't believe that most doctors even have a clue about how horrible and scary  "ultra extreme" tiredness can be.
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Sorry, I said  I had lost about 30 pounds in 8 months.  It was more like 30 pounds in 5 months.
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657231_tn?1390151580
Sorry to hear about all your issues. Pituitary tumors are IMHO, not very understood - and the aftermath of treatment is really not understood. A lot of us come out the other end weak, and never well.
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Avatar_f_tn
After years and years of numerous health problems,extream periods, hot flashes,insane moods,having breast milk 25 years after my kids were born,My doctor finally  does a hormone test when i have a 3 day unbearable headache,although migranes (migraines) are a everyday thing now they are also coming with flashes of light,dizzyness,shortness of breath,confusion on simple things i should know and constant fatigue. Of corse high prolactin levals are there and he does an mri but see's nothing. Since then Ive lost my insurance, my symptoms are getting noticably worse and unbearable but I cant afford to continue even going to the doctor,he wrote a letter to the health plan stating he beleaves it to be a microadenoma and request for that to be a consideration for me to be accepted. needless to say I was denied. My question being..If this goes untreaded,,what will happen. what happens if you just cant afford to be treated? My concern is that my 6 year old grandson lives with me and he needs me to be here for him,,any advice?
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657231_tn?1390151580
Did you get a copy of the MRI report - and the CD or films of the MRI? It may not have been done properly - were you given contrast? Were you taken out of the machine to get it or was it given while you were in the machine and the machine was going? The latter the proper so the uptake is recorded - and smaller lesions often show up that way. Smaller lesions can also fall between the slices, or the radiologist can simply miss it.

A surgeon can often review the film and see more than a radiologist.

The lesion can grow. It may remain stable. GIven that it has remained small for this long, odds are it will stay small. It has symptoms that are nasty as you are experiencing but not directly life-threatening to my knowledge for this type of lesion. If it grows it can risk some sight if it happens to grow that way. The doctor has to write the letter in a way that this misunderstood condition is taken more seriously. Quality of life is something that needs to be taken into consideration. There are links in the health pages where you can find more information for you and him - you should also search for the emotional issues of pituitary tumors as well as the physical symptoms.
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do you need to get the special pituitary MRI to diagnose a tumor?  my prolactin was 29 but the regular MRIs with contrast were negative
I have bad sleep apnea that I can't explain and wheezing asthma.  the endo put me on cabergoline which I can only afford for one month.  thanks very much
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Hi-
You do need a pituitary MRI with and w/out contrast. It is possible that your prolactin is elevated by another med or being low thyroid.

It could be that u do have an adenoma that may or may not secrete prolactin.

When will u have insurance again? Are u low income, in a waiting period for a job or can you qualify for State Medicaid?
horselip
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I have been doing a lot of research on this matter as well. You are correct that boys/men can have issues related to estrogen dominance. But, they can also take progesterone therapy to bring it back to balance. This is usually done by first putting him on adequate progesterone therapy which you can buy at a good natural food store in the form of a cream. Review his symptoms and overall wellness after 4 weeks of this. Then, add over the counter testosterone therapy cream along with slightly reducing the progesterone. They work hand in hand and will dominate the estrogen dominance for good! I am even taking that combination (and I am a 40 year old woman). Women need testosterone and men need progesterone and estrogen in the lower amounts that they need it. But, only progesterone can conquer estrogen dominance. I hope this helps.
My coworker has a high prolactin with her pituitary tumor, she suffers greatly from almost constant heavy bleeding with clots as well as constant lactation yet infertility. When she brought this to my attention, I gave her 60mg of progesterone cream and she had almost instant relieve. She is now on 60 mg daily and feels great, has lost 5 pounds, and has stopped bleeding finally! After 2 months of this to deal with the estrogen dominance, she will try some testosterone cream to see if that helps with the fatigue, mental clarity, and overall energy and wellness. Oh yeah, she has uterine fibroids too! The progesterone really helps and estrogen dominance is causing so many health problems that are disputed if not misdiagnosed. Please also be careful of plastic ware for food and drinks, canned foods, toys that are made with the phylaylates (spelling), and paraben in skin and hair products. These contain estrogenic properties and will cause the dominance to continue.
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I was diagnosed in 2004 with my pituitary tumor prolactinoma. My prolactin levels were 115. I tried taking the Bromo....but the side effects were way to much for me exspecially being an athlete in college. I havent takin it since then and now today I am told that I don't have it anymore, but I dont understand how I dont have it anymore when i  have the symptoms.Does having a CT scan and a MRI done that much different to where one can see it and the other can't? Also in Dec. of 2011 my prolactin levels went down to 87 but at the beginning of March I noticed I was ovulating and so I went in for lab work come to find out my prolactin levels went up to 152 and then two wks later had my cycle. How is that possible? In April I had my cycle again, but this time it wouldnt stop....my dr. put me on a med for 10days to stop my cycle which didnt help and then put me on birth control. Im at a lost for words......can anyone explain?
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MRIs and CTs are quite different. CTs are better at some things - and much better at harder things and bone - MRIs are much better at soft tissue and the smaller lesions (but not perfect). If you did not have a good pituitary MRI as in dynamic (and better would be a 3 Tesla) well, your chances of seeing a lesion would be reduced.

You don't say what size your lesion was but it can fall between the slices of the MRI as well as the radiologist can just miss it.

You need to be treated by a neuro-endocrinologist. That type of doctor can try different meds as well as other treatments up to and including surgery - as well as making sure the cause is a tumor (it may not).

Do you have copies of your imaging as well as all your testing? It would also be helpful if next time you start a new thread as it is hard to follow different stories when they are started after each other.
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Avatar_m_tn
Tell me more about soy and pt !  Thanks !
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Avatar_m_tn
I am currently 34 and did the Mri-did blood work. Was asked to take  meds for prolactin evels at 141. I am debating on if I should take them or not. I dont want to restart my periods. I had a tubal ligation 13 years ago and my husband is also had surgrey for we can not have no more kids.( I dont want anymore) . My questions is if I decide not to take the meds will it get worse? I dont want the side effects to effect my life. Is this being selfish> Also had anxiety attack doing MRI- Felt sick and dizzy and like Mri mad my head spin. (felt nausea for 4 days afterwards) PLEASE GIVE ME ADVICE@@
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657231_tn?1390151580
The meds are for more than periods (totally agree on not missing them!).

The meds are to reduce the size of the tumor and/or to keep it from growing as well as to reduce the effects from the tumor which are more far reaching than just periods - it is emotional and physical.

Next MRI - get a ride and  have the doc give you a medication to knock you out! What is the size of the tumor? Are you at a pituitary center?
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Just started bromo 5mg at night..prolactin levels were 143... I thought I was lucky no period was nice since I have 3 kids 3 6 &9 but the headaches dizziness and kidney stones were the worst, I'm glad you all posted I don't feel alone, my husband told me I was a imagining it and he would punch me in my tumor,,, now he feels horrible and I got a new tablet out of that remark' I did lots of blood test and I am so dizzy and taking it well hopefully
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657231_tn?1390151580
He must have some arm to reach the tumor LOL!!!

Are you have med side effects or tumor side effects? At least, hey, a tablet!

I hope your levels drop and you feel better soon. Keep us posted (and start a new thread so easier).
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Avatar_n_tn
Hi, the only condition that causes hands and feet to grow is Acromegaly. You need all your hormones tested, igh, glucose, tsh with the t4 t3 trh, prolactin etc.You need to find a good Dr. of Intergrative medicine who listens and tell him this symptom. Ask them to test you human growth hormone hgh, And IGH, and if need be glucose test to check the HGH, Prolactin levels can rise from Acromegaly too. Acromegally is caused by a pituitary tumor. Glucose can rise, tsh can rise, and prolactin can rise. Can cause larger feet width pain, longer feet and weight gain, bone pain , etc. Try to google. God bless you, guide you to compassionate Dr. and heal.
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I did and ended up with so much acne I couldn't take it!
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You could be my identical twin! Seems like you have wonderful doctors, you are lucky! I see it's been 4 yrs since your initial post. How are you doing now?
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Sarahb79
I also have the same problem, I'm on destinox and I take it 3 times a week since last November, levels are still going up and my endo keeps saying it could be stress?? Even tho I told him I'm not stressed ...  I pusuaded him to do an MRI and have an appointment for the end of the month so will see what that brings...

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657231_tn?1390151580
Please find another doctor. Illness can raise prolactin - but if you have consistently raising levels you need a neuro-endo or a different neuro-endo.
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Avatar_m_tn
I also have the same problem my prolactin level was at 87 and have been taking cabergoline .05mg 2x a week my prolactin level has dropped to 27. I have been taking cabergoline for the past 3 weeks. I got my period one week after starting the cabergoline ( last period was march 2013). I have a macro tumor 18mm by 14mm. My next MRI is scheduled in 3 months. I am 28 years old. I also had severe headaches with the cabergoline and i drink the pill in two parts. I dring 1/2 on monday the other half on tuesday and again 1/2 on thursday and the other half on friday. It helped me alot by doing this.
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If your tumor is that large, and is not responding to medications - aka shrinking - soon, then I hope your doctor is going to evaluate for surgery soon.

Larger tumors, that is over 10mm are typically removed as they are faster growing and can cause way more symptoms than just the hormones - and the hormones alone are nasty enough.

Seek another opinion if necessary at a pituitary center.
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I just found out I have high prolactin.  I can't believe my four months of daily agony came down to this one hormone!

I literally had to go to the ER after a particularly painful headache attack.  Thank god the hospital I went to has a nationally recognized neuro unit.  They admitted me and got to the bottom of it, after months of inept doctor's appointments giving me a "stress" diagnosis.   LIterally, I was poked and prodded and scanned for 12 hours straight, and the ONLY abnormality was the prolactin.  No tumor was found.

My symptoms were weird pulling/tugging sensations behind my eyes like deep strain, excruciating ear pressure and back of head (behind ear) headaches, and pressure welling up from my chest to my head with heart palps - almost like a flushing/rushing feeling like a hot flash would come over you (but no heat, just pressure rising).  Then the dizziness and nausea.

I am 45 so not sure but this rise in the hormone may signal perimenopause for me.  In any event, Im glad I am on the road to getting it under control. I am literally pissed at how everyone (my doctors, even my family) treated me for the past four months like I was a crazy loon!!!
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596605_tn?1369950227
Hi!
Prolactin, when elevated, has a relationship with dopamine a neurotransmitter. What was your level/range?

In my case my cycles had stopped yet I was 40 y old so prolactin was checked by my ob/gyn. But, nonetheless, I spent years under the care of a psychiatrist, because of the depression, anxiety and fatigue that I felt. Like you, I was relieved to find out that I was not crazy. Well, not Crazy, crazy if you know what I mean. wink wink

Just remember that this is the beginning of your journey and that you might have been acting unlike your normal self so try not to hold onto the anger. No-one knew exactly what was going on, esp you. But it does feel good to get the validation. Validation felt so good even tho I was terrified to be ill.

So have your other pituitary axis hormones been checked ? ACTH, Cortisol. IGF-1, TSH, Free T3, Free T4, FSH, LH, estriodiol, progesterone etc?

Elevated prolactin is NOT a signal of perimenopause. It could be a sign of other things besides an adinoma or prolactinoma tho.

Have a nice evening-
Horselip
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Avatar_f_tn
Well I also have a prolactinoma and my level at the beginning was 2200 that was in July 12,2012. I would get really bad headaches were I would drop to my knees the pain was horrible, my menstrual cycle had stop, my moods were crazy, I couldn't stand anything or anyone I pretty much had no patients. The pain would wake me up at time put a lot of pressure on my right eye I would get the pain more than 10 times a day and after the pain would go away I would fall asleep. I had no energy, I could not eat everything would trigger the pain. I didn't have insurance so i couldn't afford the medicine for 6 months so I liked for a job with insurance and I now have been on Cabergoline .5mg 4 tablets twice a week for a year now. This month I go see my Endo doctor to see if I have to combine my medicine with another medicine since my prolactin levels have only gone down to 1095. I no longer have the head pains, I now get my menstrual every month, moods swings have changed, my heat flashes are gone finally and I no longer feel like a pregnant women.
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Do you know the size of your tumor?
NIH would treat for free (and there are mercy flights) as well as perhaps cancer hospitals - I see you are in TX - have you tried MD Anderson?

You may need not only meds, but perhaps they may have to consider surgery.
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Your story is my story! For me it started in March 2012. I told my internist I had weird head pressure and tingling in lower, right back of head, pressure behind right eye and headaches that felt like little electro shocks. She sent me to an ear, nose throat specialist who thought I had a sinus infection. After 21 days on an antibiotics, I developed diarrhea for two months, had a colonoscopy and a diagnoses of IBS. Still had all the original head symptoms, back to internist who ordered an MRI of head and neck because of the intense head pressure that can be alleviated when I tilt my chin up or move my head. Insurance only would pay for neck MRI. That showed I had two bulging discs. Internist said that would not cause the head issues. She recommended a very well regarded neurologist and I had to wait 2 months to see him. Meanwhile Internist felt my thyroid and ordered ultrasound which showed many tumors but one that was vascular. Then I was sent to an Endo. She FNB that tumor, test cam back inconclusive. I told this dr  about my head pressure/aches and also  rapid weigh gain, specifically told her I feel like there is something in my head. She told me point black, "YOU DONT HAVE A BRAIN TUMOR" and practically rolled her eyes. Fast forward, three months for re biopsy of thyroid tumor and I told her my period comes every two weeks now, I'm dizzy and sleepy all the time and I have more eye pain. Biopsy was non diagnostic (beginning to think she can't preform this procedure) and she ran blood tests that show elevated prolactin levels. She arranged a pituitary MRI. Meanwhile the neurologist appt finally came. The second I told this man I had headaches he got all indignant and said he doesn't treat "headache" patients and promptly escorted my husband and I out of the room. I started crying and he handed me over to the front desk and said his newest colleague handles headaches, get an appt with her (she just graduated and has been in practice a few months. My husband politely declined and we left.)  All this run-around for almost a year, all my pain and suffering, but I feel like I'm finally getting somewhere. MRI from Endo is tomorrow. I feel like sh*t, but at least I don't feel crazy anymore.    
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My reply below was meant for you!
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657231_tn?1390151580
Good luck with your MRI. Start a new thread and let us know how it goes. It is confusing in this one with too many stories of too many people.
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Hello, All.
  I was just diagnosed with a microadenoma on Tuesday after getting my MRI results back. I was having ammenorhea, milk production (not pregnant), decreased libido, headaches, floaters in peripheral vision, and a swollen gland in my neck.  I went to my PCP and had a thyroid scan, finding my thyroid was fine.  They did find a swollen lymp node, but said it was no suspicious for malignancy.  Then they ran the prolactin level in it is 60.  Had the MRI, and I have a 6mm tumor on the right side.  I am already having decreased vision and worsening headaches.  I hear that most of these are benign.  I do not get to see the Neurosurgeon until the 17th and am just very fearful.  Should I be concerned?  I worry most about the enlarged node and swelling to my neck, makes me worry that it might be cancerous.  Anybody else experienced the enlarged node with the microadenoma?  
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657231_tn?1390151580
It is more helpful to start a new thread so your story is not mixed with a bunch of others.

We are patients - not doctors or nurses on this site.

I can tell you from my experience though - I had a similar tumor. I also happened to have (and still have) and enlarged lymph node. Why is your doctor sending you to a surgeon? Surgery is not the treatment or rather the first treatment for a prolactinoma? It can be treated with medications. So you need to find a pituitary center and a proper pituitary endo - a neuro-endo - to monitor your health. Only in the cases where the medications do not work do you move on to surgery. And you would go on to an experienced pituitary surgeon, not just any surgeon. With your vision issues you also need a neuro-optho, but your tumor is too small really to cause visual issues. It can cause headaches and migraines can cause visual issues. I know mine do.

As for the lymph node in your neck, my best guess is that it is most likely unrelated. You should see an ENT and get an FNA  (fine needle aspiration biopsy) for a check.

Please let us know how it all works out.
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Julie. Have you been tasted for Cushing's disease?  Have you done 24 hour cortisol, saliva midnight tests, and dexamethasone test? If not, you should ask your endocrinologist order those tests. I hope you feel better.
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Mine was 163 at diagnosis -- tumor 6-7 mm

Symptoms in hindsight were low libido, crazy mood swings, hot flashes, achey (achy) all over, headaches with aura. The breasts were leaking. Weight gain .Dizziness. Blood pressure up and heart rate slow.

Now prolactin is 15 after 6 months on cabergoline. 0.75 mg twice weekly. Started Synthroid 6 weeks ago.. Beginning to feel human.:)
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I have a Macroadenoma and most likely will have surgery in August, 2014. For those that have been through the surgery through the nose will you tell me what that was like and the follow-up?  The follow-up regulation of the hormones sounds onerous and complicated.  Of course I am just hoping for a miracle and that the tumor will magically disappear.
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We would all wish for that miracle for you and for all, but... back in the real world,,, yes it is work.

I found the surgery easy to be honest. I have had 12, pit surgery was one of the easiest.

Hormone tweaking is a pain, but I have a decent doctor. That is important. I put all my meds in those 7 day, 4x a day things (I have a bunch!) so I take my meds in a consistent manner - that helps too. Work with your doc and pharmacist around any vitamins (for instance you don't take calcium and thyroid near each other) so you can get the most out of your meds - and after a while, it is not so hard.

But it is a new life, new body, new learning curve.
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