Brain/Pituitary Tumors Community
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541196 tn?1293552936

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?
73 Responses
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.  :)
541196 tn?1293552936
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.  
Avatar universal
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.
Avatar universal
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.
Avatar universal
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
Avatar universal
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.
Avatar universal
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.
541196 tn?1293552936
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. :-)
875426 tn?1325528416
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.
899531 tn?1241877550
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.
Avatar universal
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.
596605 tn?1369946627
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.
1064927 tn?1263563599
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 :)  
Avatar universal
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.  
Avatar universal
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.
Avatar universal
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?
Avatar universal
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.....:)

Avatar universal
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.
Avatar universal
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.
Avatar universal
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?
1496800 tn?1288898460
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?
Avatar universal
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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