Patient Comments: Prolactinoma - Symptoms

Question:

What were the symptoms of your prolactinoma? Submit Your Comment

Comment from: Fatemah, 25-34 Female (Patient) Published: March 19

My prolactin was 1536 where normal is 500. It was double higher than the normal level. My doctor immediately told me that I have to do MRI or CT scan. I have done that 7 weeks back and so they have discovered a 4 mm x 8 mm gland pituitary tumor in the left side of the brain. Now it's the 7th week of the Dostinex to treat my prolactinoma. I started to feel hard pain in the right area of my breast and armpit. It feels like hot pain, heavier breast than the left one, and I cannot sleep at night. I am feeling stressed, depressed, moody and angry.

Comment from: LB, 25-34 Female (Patient) Published: May 01

I experience pain on a daily basis in the whole of my right leg. My right groin has lumps in it and the pain travels down more to the inside and the back of my leg. My knee is also involved on the back and inside, then my shin, and sometimes to my foot. It aches deep.

Comment from: Ilse, 25-34 Female (Patient) Published: February 01

I was diagnosed with a macroprolactinoma a little over a year ago at the age of 30. Symptoms included no period, dizziness and headaches, lactation, decreased eye sight, low libido, bad facial pigmentation and regular hot flushes. My gynecologist picked it up, sent me to the endocrinologist, and for blood tests and MRI scan. My initial blood tests revealed a prolactin level of 118. Once the prolactinoma was confirmed, a neurologist put me on Dostinex which I have now been on for a year. The side effects have been very low although I am now starting to lose a little hair. Not sure if this is normal. My periods have returned, no more lactating, few hot flushes. My eyesight is still bad however and I still have facial pigmentation. My annual MRI scan has revealed that the tumor is shrinking, however it is a slow process and the doctor reckons it will take between 2 to 5 years before we see a significant decrease in tumor size. I am now 31 and hope to have children but am concerned that I still have to wait another 3 to 5 years before that is remotely possible.

Comment from: patient, 45-54 Female (Patient) Published: March 17

I was diagnosed with prolactinoma in early 1980s in my early twenties with symptoms of irregular periods, breasts producing prolactin, and increased weight gain. An MRI showed a tiny pituitary tumor, so began treatment with Parlodel. Although the instructions were to take 2.5 every other day, I became pregnant, and miscarried during the first trimester. After that weight, and breast size continued to fluctuate, but eventually I took 2.5 Parlodel twice daily, and brought symptoms to normal. Two more miscarriages, in first trimester followed. At age 33 finally I carried a baby full term, used one round of Clomid to help determine when ovulating, but started to have spotting during second month and discovered I had a blood antibody that attacks fetus (side note I have many allergies/asthma). So at that time (1995) I took one baby aspirin a day to thin blood until delivery and carried full term. I resumed Parlodel treatment 6 months after breast feeding. Second child came in 2002, again I went off of medications during pregnancy and used heparin shots until discontinued by 4th month. In 2014 I have entered menopause, and physician wanted to take me off of medications. I fought it, as in the past when he suggested to do this, prolactin increased, then I must go through the weight gain, low energy level, etc. (I feel like I have gone through menopause many times). Then the real thing in 2013 to 15. I had an ocular migraine (never had issues in past) but MRI showed no evidence of tumor, or reason for the migraine, but I was forced to stop Parlodel. Three months later, prolactin levels were rising, around 30, so I was allowed to go back on medications. I am currently on 2.5 twice a day. I hope my information will help others, and physicians to look at cases to better solve this issue.

Comment from: betsy, 19-24 Female (Patient) Published: August 12

The first sign on my prolactinoma was on my 16th birthday. While in the bath, I noticed my breast had leaked a pale white fluid. I cried to my mum, who was horrified thinking I was pregnant. Obviously, still a virgin, I was so confused as to what it was. My general physician said it was nothing to worry about, so I didn't; for 3 more years. It was only when I went into the doctor's for the 3rd time, saying I wasn't having periods, was I sent to have an MRI scan. I am now 19 and have been on cabergoline for over a year. It makes me extremely ill, depressed and anxious. I am very confused about what's next for me, it seems that with my age, doctors hold off from telling me what really going on. I really hope I can have children one day.

Comment from: curtdave, 55-64 Male (Patient) Published: April 14

I suspect that I had prolactinoma for twenty years before it was diagnosed. It affected me mostly as sinus problems, headache, mucus discharge and drainage that caused heartburn. I did also have low sex drive and was receiving testosterone injections. I went to 3 different ear, nose and throat physicians and had 3 different sinus surgeries. I went to a fourth ENT because none of the surgeries or treatments relieved the sinus issues I was having. The fourth ENT performed a CAT scan and found something unusual and sent me for a MRI. The MRI showed a very large tumor on my pituitary gland, it was so large that it had invaded my sinus cavity. Blood tests showed low T, and very high prolactin levels. Cabergoline was prescribed and in less than a month I lost 50 pounds, my sex drive was back, sinus issues went away and testosterone levels went to where they belong. My endocrinologist seems to think that the weight loss had nothing to do with the tumor but I think it does, I have not changed my eating habits or how much I exercise. It"s been over two years now and I feel great, better than I felt through all of my forties and my early fifties.

IMAGES

Prolactinoma (Pituitary Tumor) See brain scan pictures of Alzheimer's and types of dementia See Images
Comment from: Keatta, 35-44 (Patient) Published: December 27

I was diagnosed with prolactinoma (adenoma) when I was about 25 years old; that was about 14 years ago. I had an endocrinologist who prescribed bromocriptine for my galactorrhea (breast secretions) for about 8 years. I asked to attempt to be off of it. He dropped me as a patient. I was off that drug until last year at age 38 when my symptoms returned. I've since had vertigo, headaches, and been to a new endocrinologist, who doesn't seem to think there's cause for concern at all. He's sending me for an MRI, considered non-emergency of course. I practically had to beg for it. I take a probiotic daily and I'm wondering if this is a contributing factor to this resurfacing galactorrhea. My TSH and TRH (hormone/thyroid) levels are normal apparently.

Comment from: SHarb, 25-34 Female (Patient) Published: November 20

My first symptom was breast milk production, although it was very little. I didn't worry about it until we started trying to conceive and could not. One and a half years after trying actively, I started having pain during intercourse. The doctor took blood and saw that my prolactin was double what it should be. He sent me to get an MRI which I am getting next month. In the meantime I am taking Dostinex twice a week for one month. Hoping to be able to have kids!

Comment from: BB12, 55-64 Female (Patient) Published: October 08

In 1991 my body started to shut down. The doctor who first examined me said it was arthritis, then fibromyalgia, and then nothing. An endocrinologist did an MRI that located the prolactinoma (pituitary tumor), and the out of order blood counts. I had my first surgery in February of 1992. At that point, my symptoms included severe headaches and loss of vision. The size of the tumor was larger than a golf ball. In 2000 I was surprised to have the same symptoms reoccur. I went to another endocrinologist, who discovered the tumor had grown back. After this surgery, I went for 6 weeks of radiation treatment. I now have MRIs every five years. The second surgery caused more damage, and I now have scarring on left temporal lobe. I also have scar tissue in both left and right sinuses. I will be taking medication for the rest of my life. This is very serious, a life changer.

Comment from: von, 45-54 Female (Patient) Published: July 28

I have all the symptoms of emphysema and chronic bronchitis; chest tightness and back pain, coughing blood, shortness of breath when I exercise, and always tired. Overinflated lungs is all that shows on x-ray but I cannot get diagnosed with anything, and cannot get the right medication. My symptoms get worse when I go the city with the smog and near the ocean and unflued gas heaters and cooking smells. So as you can imagine, everyone tells me it is in my head; definitely not. I have been perfectly fine up until 4 years ago when all this started. I don't know where to turn to next. I had bronchoscopy, CT chest scan, MRI of back (for the pain); my symptoms just are not getting better. I have seen 3 respiratory doctors and all say there is nothing and I cannot work out what's happening.

Comment from: Soran, 45-54 Male (Patient) Published: December 16

It was spring 2010 when I took my child to a park to play and felt dizzy twice. Next day I went to the ENT suspecting I have some flu or virus, and the ENT sent me for MRI and we found pituitary tumor, type prolactinoma. My blood test shows over 250 prolactin. Since then I am under hormone therapy, and getting Dostinex, thyroxine, testosterone, plus vitamin B12 injection. Gradually I felt much better with regard to my movements! Memory, and sexual appetite were regained. After three years my doctor advised me to use Nolvadex 20 mg instead of testosterone injection, and I am little doubtful on that, but I just started use it and so far I want to see what kind of change it makes regarding pumping up my sexual power.

Comment from: ilovefreebies, 25-34 Female (Patient) Published: October 03

I had my obstetrician/gynecologist appointment last month and blood work done. My prolactin level is high so the obstetrician ordered another blood test, and it still came out the same. So she asked me to see an endocrinologist because she said it might me a prolactinoma. I had headaches and blurry vision, I had my eye checked also before my obstetrician appointment, and I have a little prescription. Now I am hoping for a good result on my next appointment with my endocrinologist.

Comment from: Buttercup, 35-44 Female (Patient) Published: March 11

Ever since I started with menses, I"ve been irregular, to the point of being anemic. When I was 25 I noticed I had a creamy discharge from my breast only during my period, which would be every month or every 3 to 6 months! Anyhow, I told my doctor and he said "don"t worry, this happens to some women, you"ll be fine and don"t squeeze!" I had a negative breast ultra sound and an ultrasound of my uterus, everything was normal so I didn"t worry until now… 18 years later. My initial prolactin level was in the 50s, since my MRI was negative the endocrinologist asked me to be aware of other symptoms. Eight months later I now have headaches about 3 times a week. I"ve been juicing for about two years and trying to exercise though truthfully I think it"s only about 2 times a week but I believe all this helps. My last prolactin level was 74 last month now I"m waiting on another MRI. I hate being sick, but knowing me I won"t go gentle into the night! I appreciate everyone"s input.

SLIDESHOW

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Comment from: Mae, 25-34 Female (Patient) Published: February 24

I"m 27, was diagnosed with a prolactinoma in February of last year (2013); it was roughly 9mm. I am on bromocriptine and the breast milk and headaches stopped in August 2013 but have started again. I don"t have a normal period, but I do have one now, whereas before I did not.

Comment from: STELLA, 25-34 Female (Patient) Published: November 18

I have been unable to conceive after 2 years of marriage. I was diagnosed of uterine fibroid, I did a surgery and got it removed successfully. After three months I went for HSG (hysterosalpingogram) and my tubes were confirmed ok yet still not pregnant, a month later I went for hormonal profile and the result revealed very high prolactin and TSH but I have never noticed any negative symptom like breast secretion. I have been on Parlodel and clomiphene for almost two months still up till now I have not conceived. I am very worried about the whole situation.

Comment from: LS, 35-44 Female (Patient) Published: July 09

I was diagnosed in 2001 with a prolactinoma (1.2cm) and has been on Dostinex since then (.5mg once a week). My initial signs were weak eyesight and breast milk. After all these years and meds, I still produced breastmilk and my eyesight weakend even more. In 2011 I had breast surgury to remove the very enlarged milk ducts. I am happy to say I am milk and pain free now. I am concerned about the recent studies on the link between Dostinex (cabergoline) and heart valve problems. Is there anyone out there who has experienced this problem? Thanks LS - Gauteng, South Africa

Comment from: DagnyT, 55-64 Female (Patient) Published: May 06

I've had a prolactinoma since 1986, but all this time I've been told it was an incidentaloma, and nothing to worry my pretty little head about. But four years ago (after two weeks in a psych ward in 2007 for unexplained suicidal depression) I got so sick I couldn't function at all. I was depressed and had panic attacks, still had galactorrhea, developed splitting headaches and nausea, chronic indigestion and gastroparesis and constipation. It was like my whole body was shutting down. Now I have no energy or motivation – just lethargy and apathy. I finally was referred to an endocrinologist after my primary care doctor labeled me fibromyalgia and put me in the "unhelpable" pile and washed his hands of me. My prolactin level was 117, with a reference range of 2 to 25. My thyroid tests were normal. I am awaiting an MRI. I was given cabergoline but can't tolerate it. My tumor was 6mm back about eight years ago when I last had an MRI.

Comment from: hotchick, 35-44 Female (Patient) Published: January 03

I have a pituitary tumor and it grew from 4.1 to 5.5 mm. I am waiting for a fluroscopy and more field testing. I was put on Progesterin today.

Comment from: CleveGal, 35-44 Female (Patient) Published: December 26

My prolactinoma symptoms went unchecked by my regular doctor for about six years. The first one was seemingly uncontrolled weight gain and an inability for me to lose any of it despite exercising vigorously and a significant change in diet. Then came irregular menstruation, skipped periods, and then eventually no periods. My doctor attributed it to menopause (I was 42 at the time). Technically she was right; it was menopause induced by the prolactinoma. It was my gynecologist who felt that I was too young to be going through menopause and who suspected the pituitary tumor. He referred me to an endocrinologist. The endocrinologist performed extensive blood tests and then, based on the results, had me get and MRI. These tests were really just to confirm what he initially suspected. He was not at all surprised by any of the results.

Comment from: wilson1010, 35-44 Female (Patient) Published: June 14

My pituitary tumor was found when I had a severe headache that progressively got worse, eventually causing vomiting, vertigo, and intense pain behind my eyes. The tumor had hemorrhaged so it had to be removed once the swelling went down a bit. Now, my pituitary gland is not functioning so I am taking the hormones in pill form. Thankful for the second MRI that finally showed the tumor. Neither CT scan showed it.

Comment from: DH, 25-34 Female (Patient) Published: August 18

My blood test showed high levels of prolactin. So a MRI was done and showed nothing! My doctor wants to repeat in 6 weeks just to keep an eye on it. The more I read about this, the more I feel uneasy! I have All the symtoms, but they could be cause by my meds that I take already (I'm recovering from back surgery).

Comment from: Lu, 65-74 Female (Patient) Published: March 16

I did not have any symptoms at all. The prolactinoma was discovered when I developed vertigo, and a CT scan was ordered. The dizziness I had with the vertigo was totally unrelated to the prolactinoma.

QUESTION

A concussion is a traumatic brain injury. See Answer
Comment from: just me, 25-34 Female (Patient) Published: August 23

With my prolactinoma, I started to rapidly gain weight, felt very fatigued, lost my period, and had really bad headaches. Then after a little while, those symptoms increased to also lactating (as if my body was pregnant). When I went to the doctor they kept telling me that everything was alright. I was 22 years old then, and finally begged to see a specialist. The new doctor ordered an MRI and that's how they found it. Mine is a Macroadenoma 16 x 14 and unfortunately too large to try and remove. They put me on Dostinex and it has stopped the growth, but the hormone imbalance is still there.

Comment from: mrs. Rohl, 45-54 Female (Patient) Published: June 14

A blood test showed raised levels of prolactin. I had fluid in my breasts also. I did not do the MRI as my doctor asked. I had a CT scan done of the pituitary gland and this showed a pituitary microadenoma. I am taking Dostmex two times a week for one month. My doctor is only monitoring it now to see if it gets bigger.

Comment from: Stephanie, 35-44 Female (Patient) Published: March 17

I did not have a period for a year and a half. My ob/gyn said it was because I was overweight. I didn't believe that. Eventually, she did a blood test and found that my prolactin levels were high. After medication (bromocriptine), I started ovulating and having a period again, and got pregnant with my now, 7 month old, after having two other girls, 15 and 17 years old!

Comment from: maria, Male Published: March 07

My periods stopped that's how they found my tumor. I got the operation and then six weeks radiotherapy.

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