Prolactinoma Support Group

hi,

Sorry your going through this. It sounds like a lot is going on at one time. Do you think maybe an MRI would show something that a CAT scan couldnt pick up. I really wish i could be more of a help to you. I have prolactinemia but i didnt have most of the symptoms you have. Just discharge from the breasts and irregular cycle.My cramps werent severe like you discribed. I say dont give up on finding out because something is obviously wrong. Within tme they should be able to at least diagnose you with something. You have to many symptoms. I hope everything turns out well. Please keep us posted.

Best wishes

Some of it is familiar... I started my periods when I was about 12, and they were always very heavy, very irregular, and very painful. My mom had a history of endometriosis, so they thought that was an issue with me as well, they never found that, but they did put me on the pill when I was about 15 or 16, I do get migraines, though usually just from chemical intolerances (aspartame, MSG, red40...) and most of my migraines would start on my left.. that's how I knew something was wrong, when I wasn't having any periods after stopping the pill (they tried provera or whatever it is twice, before I gave up and found a different gyno) because all my headaches, especially when I had sinus pressure (I get frequent sinus infections, and have allergic asthma as well.. though now that is under controll thanks to AllegraD) anyway, the pain from the sinus headaches would cause my right eye to twitch, now that I don't have the sinus issues, I still have pain and/or twitching in/behind my right eye. I was recently found to have a 4mm growth on my pituitary, they just did a second round of blood work and a 2nd MRI because the last work was done almost a year ago and the endo I was supposed to see passed away which made me have to wait longer to get in... I am rambling, where was I? Oh, the headaches are so bad now... they travel down my face into my jaw and ears... and instead of no periods I have a period every other week, my emotions are a wreck, (flying or falling), my students have accused me of being adhd and bipolar (hey, they're in jr. high and half of them have been told the same thing... I know I look a mess to them sometimes, but I've got to work, and I do hold all my energy for them. All this, and based on the first blood work, my prolactin was a mild 57... I am guessing the most recent panel is going to come back higher.

Hello Mirthe,

Wow. You present with a large set of problems. I am unsure if you said that they did find a growth or not?

I am in a similar situation myself and reading some of your descriptions have brought up other past issues I had leading up to my current bout with high Prolactin levels.

Elevated prolactin levels or even milk discharge from breast can be caused by a variety of things but is mostly attributed to:
Pregnancy, growth on Pituitary, Thyroid, Adrenal adenoma, growth on the hypothalamus, or stimulation of the thoracic/chest/breast area (ie having an arm cast rub against the side of your chest, a lesion in your thoracic area inside or outside your body, etc.) even stress or medications.

A lot of doctors, which are dictated by insurance companies, may take very basic diagnostic tests for any of these areas which might make them miss any issues. For example, a basic blood thyroid test is not a strong indicator to determine if someone may be suffering from a thyroid disease. An ultrasound or sonogram would be a better way to follow up (my mother suffered from thyroid issues for years and every blood work came back negative till one day she was in the hospital for another issue and they only fed her through IVs for the duration she was there and she was not losing any weight at all and that's when they discovered there may be a thyroid issue, 20 years later she felt a lump on her throat and the doctors poo-pooed it till she saw an ear-nose-throat doctor who said there was something going on down there. They had surgery to take out one of her lobes and upon removal that lobe was a dark mangled tumorous growth nothing of the likes her surgeon had seen before). So you may have to do your own research to see if there are more accurate tests that could be taken in order to rule out some of the possibilities.

With many on this website, during the initial phase of having a growth on the pituitary was not initially seen on an MRI till a year or two later. So extra images may need to be taken later on if anything progresses.

There's a slew of other blood tests your doctors may or may have not taken to rule out things: FSH, TSH, FS, TRH, DHEA, Estrogen, Testosterone, Lipid Panel, etc. If you want a list of the tests, I can give you some. Some of these like lipid, cholesterol, testosterone will help to rule out PCOS due to ovarian disregulation, Cushings disease, etc.

I would take assessment of your medicine you are currently taking whether they are psychotropic drugs (anti depressants, prozac, etc.) because these have been known to elevate Prolactin levels due to its dopamine effects. Also vitamins or herbal teas can trigger Prolactin. I forget the exact herb, but teas like cleansing teas have a herb in it that actually increases lactation (I drank it a few years ago (just one or two cups, couldn't stand it).

Stress can contribute, so see if you can attribute the lactation to any extreme stressors in your life.

Endometriosis can be interesting because no one really knows if you have it till they do exploratory surgery to confirm it. Those plaques associated with it can travel to interesting places within the body and wreak havoc on some people.

In June I had moderately elevated Prolactin levels (~56 ng/ml). I was going through stress by having two very abusive/insane/tyrannical/insecure bosses targeted on me (people shouldn't have to deal with mentally ill bosses on the workforce). Then all of the sudden my period stopped for 3 months. About a year before I noticed something similar to lactation but didn't know what that was so I decided to have a mammogram done also during this time I was "chasing" my periods because they were less regular, more all over the place, etc.

If it wasn't for my period to stop, I don't think my PCP would have done anything, she would have contributed it to my weight gain (which is most likely related to my elevated Prolactin level). But she decided to take some blood work and discovered I had elevated Prolactin levels... which all made sense to me (I didn't know I was lactating till 3 months ago when my friend gave birth, she wasn't shy about pulling out her breast to breastfeed. When I saw what and how much was coming out of her breast I knew I had a problem!).

When my period returned I had crazy pains, especially sciatica related and they were HEAVY! Now we are back to square one with my period missing again and my Prolactin levels double the values about 3-4 months ago. Year or two before this, I would have a right eye twitch and I would notice that my right eyelid was droopier than the left. I don't have the twitches anymore, so that could be just coincidental. I am waiting for results from my MRI scan to see what the findings are.

What I would have you to do is to go back to your doctor, continue doing research on the internet about your issues. Have them do more tests. You did say you have had kidney problems, which involves your adrenals so I would ask for them to do a CT scan or MRI of your abdomen region again to see if they're not missing anything there. Maybe just controlling the issues with your kidneys may help your other issues with skin, hormones, etc.

Best of luck

hi... sorry to hear you're suffering from all those! please get neuro's, endocrinologist's or gyn's advise. If you still get no treatment for that, try to consult another one. Dont settle for juz one doctor.

I think it's good to get an MRI to get a thorough examination of your brain. I have a prolactinoma (the growth is situated at the base of my brain, pituitary area - and yes it's really big) that is caused by very high prolactin level (400++). Some of the symptoms of a person having this thing are milk discharge, blurry vision (due to compression in the optic nerves caused by tumor), headache, and in my case no period at all.. but after 2 months of medication, i got my period back and my prolactin level went down. There's always hope.

Your case might be different but don't give up. Hope you'll find relief soon!

Godbless!

Sounds very familiar to me. I had almost all of the above, except i was in and out of the hospital in high school for fainting and dizzy spells too. They still didn't diagnose me with a pituitary tumor until I told the doc that my grandma had one, and i had already been lactating for 2 years, and missing periods for one. Considering when my problems started....it was about 7 or 8 years before it was actually diagnosed. As for your prolactin levels being normal, some doctors will tell you that even if you are on the high side of normal (in my experience). Say your levels are 21-23, and they tell you that it's normal. It's not actually, and I've read posts from people that had plenty of symptoms with a level in that range. Either way, I would ask to be tested so you don't waste your time. Good luck.