I still have mildly elevated prolactin levels, even though there is no longer a growth.
It is because of something called stalk effect. Simply put this means that the hormone that is made by the Hypothalamus that is supposed to bring down the prolactin levels is not getting through to the Pituitary gland. This is because the stalk that connects the two glands is bent.
I'm not saying that this is what is going on with you, but it is one thing that can happen with some people. Like others said, it may be a small growth that is just not showing up on the MRIs. I've also heard of prolactinomas being in other places besides the pituitary gland.
My MRI showed a small 3mm by 4mm indication on the pituitary. They (Dr. who read MRI) are calling that a normal MRI. Nonetheless, I have been home for over 2mos. trying to get back to normal. My prolactin levels were at 180 when I started feeling sick (extreme dizziness, pressure headaches and earaches, numbness of left side arm & chin). I have had all sorts of blood test drawn checking for thyroid(high), cholesterol(high), lupus & other auto immune disorders(Dr. said I tested positive for lupus but that levels were borderline). At this point...I have been on Meds for all of the above for close to 2mos. Headaches, earaches, extreme dizziness, eye to light sensitivity, numbness (not as often as before...it comes and goes. Dr. suggested I make an appt. w/ neurosurgeon...so I have an appt w/him this Thurs. and now He has ordered a visual field test. I am starting to feel like a walking and talking science experiment. Not sure on what other direction to take other than what dr. orders. Information posted here on Medhelp is so useful and thanks in advance for your responses.
Ok - the doc that read that as normal should be taken out in the back woods and shot. After you find a new, competent doctor that knows what he/she is doing, then you can be treated.
You do not need a surgeon - you can be treated with medications. Only when medications fail for a prolactinoma or the tumor continues to grow do you look to surgery. There are a few meds to try - did you try both?
To your first statement... I agree. I am currently seeing a general doctor, endocrinologist, opthomologist, and NOW as of tomorrow a neurosurgeon. I am still experiencing the symptoms I mentioned in my previous post. Blood work results drawn this week to track my prolactin levels is still not in and visual field test came back normal.
Yes I have taken both medications and I am currently taking Bromocriptine 2.5mg (one pill a day). I have been on this for almost two months now...and the symptoms are still present. I feel like my head weighs a TON and the pressure on my ears and back of the head are too much. The dizziness I experience is just a bonus. I have tried pain killers...and they are NOT effective. A friend of mine also suggested a chiropractor to make sure I don't have a pinched nerve?
Something is wrong w/ me... and I can't seem to get any answers... just more tests and more Dr.'s to see.
The appt. w/ Neurosurgeon is tomorrow. I am taking MRI pictures and results, previous blood work results, endocrinologist and opthomologist reports w/ me. I am hoping he can shed some light on my situation, if not that, then refer me to a competent doctor who can help me.
I have been getting more insight here on MEDHELP that any Dr. I have seen in the past couple of months.
Thanks for your insight...and wish me luck.
dostinex works great for me... I have some dizziness and nausea the day after I take it, but overall it has kept my prolactin levels well with in normal range and it seems like the tumor is not growing. (MRI's have not shown much).
I have been on Dostinex for over a year and still have weight gain and some of the symptoms before. Fertility has not returned either. But periods are normal. When the pituitary gland is effected the rest of your endocrine system can get wacked out too... have your endocrinologist run tests for adrenal, testosterone, diabetes and thyroid periodically.
On my visit to neurosurgeon it was discovered that my tumor hemorraged. The MRI pictures showed this... Luckily enough for me the hemorrage that occurred was not large enough to affect optical nerves or anything else for that matter. To avoid any future hemorraging and because medicine was discontinued for a year (this was when Tumor was "gone")... I have to have surgery to remove Tumor. The surgery is scheduled for the 14th of December. Do not know what to expect YET... So I'm pretty scared.
I had the surgery - while no surgery is *fun*, of my 12, it was not my worst. Prepare ahead of time so you don't have to bend over - put stuff you think you will need above waist level. Slip on shoes etc. I felt much better after surgery.
Make sure your surgeon has done bunches of times - like over 500 - and you should be fine.Endoscopic is better than microscopic - surgeon has better view.
Thanks rumpled. The surgery itself is only 11/2 to 21/2hrs long (not bad). Not sure about Micro or Endoscopic. I will ask. They will be going through my upper lip, Dr said "no scarring"...yey!! Thanks for your helpful insights. How long did it take you to recover? Was there anything Dr. Asked you not to do?
It has now been almost two weeks after my surgery!! During surgery... What was once a tumor ended up to be a non-cancerous fibrosis cizst (TYG). Have to wait till the 29th December to go to two follow-up visits (Endocrinologist & Neurosurgeon). Recovering well... Still have headaches, light sensitivity, and well still having nose discharge :(. Watching TV seems to be a TASK for me... get dizzy from watching fast moving objects accross the screen. Anyone out there that can tell me how long before you recover completely? What "getting well" signs should I be looking for during recovery process? Thanks & Merry Christmas everyone!!
The Surgical procedure was done through upper lip due to a sinus infection I had due to Bromocriptine. I am going on two weeks after surgery and recently I have sneezed a couple of times, bent over, sipped through straws, and now I think I'm coming down with a cold. It was not done on purpose of course...but being used to doing things myself, it Is so easy to forget that you just had surgery and jump right into tasking :). I feel OK except for the occasional sharp headaches. I have been keeping myself away from the strong pain killers and have stuck w/ Tylenol only. My follow up appointment is soon... not sure what to expect other than normal hormonal checks.
Ok...here I am 1mo. After my microscopic surgery to remove my so called "tumor". I previously had my post op appointment w/ neurosurgeon and was adviced that I was a "one of a kind case". He explained that during surgery, he notices that the absess was NOT a tumor! It was a fibrotic cyst. There was trace of blood sitting on cavity (which he removed) and when he went to remove cyst blood just shot out like it was pressurized (my simple English
wording). So apparently that was what was causing my pressure headaches, dizziness, etc. I believe this because I have been headache free now for 6 days.
On another note, he mentioned that inside the pit. gland there was a solidified tumor...not significantly big. He could NOT remove because he would have to remove most of my pit. gland to do so...which meant a lot of supplemental hormones. He strongly stressed how confident he was that the cyst was the one causing the problem and made the call to leave tumor and control it w/ medicine. He also mentioned that he believes the bromocriptine was the cause of my tumor solidifying.
Have not seen endocrinologist after his visit, but what dies this mean? My prolactine levels are still a little elevated...which means I still have to take medicine. But if tumor is a solid, not sure if it can continue to grow, have a different effect on me?
Not sure if anyone else has heard of a tumor solidifying...but if you have, what were your experiences?
I would still go see an endo - and ask her about the side effects of the bromo. There is another med - and one is Europe... still, wow - that is strange!
Usually if the tumor bursts like that, it is called a pituitary apoplexy. I can see that some tumor have different texture as heard that from the surgeons - I know the cushing's tumors are gooey. There are cysts there - did you get back pathology and read the report?
You do not want the tumor to grow - I would go see the endo.
Thx rumpled :) Endo has not really given me many answers as of today. I'm searching for another endo that can help me and understands these types of scenerios. The pathology report was not given to me...endo kept it. When I find another competent endo is when I'm planning to ask for all of my records. I'm just hoping tumor doesn't grow. Prolactin level was @ 60 a mo. after surgery :(
Well I am usually on a liver site, but glad I fell upon this one...I had a prolactin level of over 200 and endo said I would not have a period, well I had a period and thought I was going to bleed to death..now levels are at about 60ish and well here we are again with another period....life is just grand..lol...so i am scheduled for MRI on Oct 4th, cause they want to see pit gland anyway, as I am now also cortisol defiencent...and the tests are not helping...bloodwork....
Wow rumpled...seems that you have been familiar with all the stuff that is going on with me.....
I am on Thyroid meds, and cortisol meds. I am having a MRI done on Monday...and see liver specialist on Tuesday...so not sure where it will all end up..I am having pit Mri done, to rule out alot of possiblities, I guess...Also have had a complete set of bloodwork done for all the hormones...and only one that is bad is prolactin, and well obviously the TSH...but that one is under control again...went from 25 to 75 in meds....
Had an ACTH stimulation test done, and well I am on Cortef now....so I guess we shall see what the other tests show....
If you are on cortef now, now you have at least two hormones off - so I hope the doc is going to look at your entire system - there are feedback loops and all, and you may need other meds with the cortef like florinef and salt and dhea too.
OMG OMG. I can't believe the similarity of symptoms. I know this is an old thread but I want to post this for the benefit of anyone who still may come upon it. Long story short, I just lived a NIGHTMARE of neurology appointments when it turns out the problem was prolactin all along. Sudden onset of severe headaches for four months daily behind my ear and back of head, then weird tugging sensations behind my eyes, nausea, dizziness, and adrenaline mid-chest feeling rising up to a full pressure sensation in my head and ears like someone was filling me up with air. Everyone kept saying stress migraines, but it just did not add up to me. I knew something was "off."
It was only after I was admitted to the hospital and they did a full workup of scans and bloodwork that one little test out of hundred blood tests - for prolactin - came up positive. It did not show on my MRI scan though- no tumor, just in the blood work.
I can't begin to tell you the disruption this little hormone has done to my life and functioning. Everyone was convinced it was "just stress" and that I just had to accept the daily migraines were a new part of my life. No wonder why pain meds just did not work.
I just got out of the hospital and will follow up with an endo. I can't believe all the neuros and headached dr's I saw (until the excellent hospital neuros) didn't suggest checking pituitary hormone levels. I am 45 and the high prolactin may dovetail for me with perimenopause. I highly suggest any woman of middle age experiencing crushing headaches to consider getting this test. Who would have ever thought that hormones could be this destructive!
I just responded to a different post of yours. But i wanted to rec that you request a copy of your MRI from the facility that did it. They copy onto a CD, which you can then copy and send to pituitary neurosurgeons or radiologists to read. Sometimes they are there on the images but the radiologist misses it. The images are taken in slices usually 3 mm apart up/down and side to side. If an adenoma is only 2-4 mm it can be missed by the imaging.
Also your headache could be hormonal and addressed by normalizing those that are off.
Also because of the eye symptoms,u should see a neuro opthamologist.
Are you being seen at a place with a pituitary center? Those docs have much more training than regular neuros and would have probably rec many of the things that I've mentioned.
Please MRI report is at
Today appointment done with Endocrinologist, she came out with opinion that pituitary is ok and fine, she is not ready to do any of further assessment like dynamic MR or Genetic test,.
She accept that it may have tiny stuff in pituitary but without any decision. She ruled out that obesity/center weight has any link with low growth hormones at all. she is after to reduce weight, confused that how to reduce weight? non tolerance to exercise. I explained to her that in case MRI comes out with no tumor then you should do further testing like ferritin and genetic test,.
She explained that TSH is not hormone of pituitary at all. for low TSH, does such opinion is worth to accept or not. she told that because I am taking synthyroid ,it is ok. does this can accept.
Only opinion she explained is worth to accept that due to low testosterone ,my prolactin and FSH goes high , for high LH she told she is not worried for this, for cortisol low and DHEAS low she does not have any clue.
She ruled out reason of center headache is of low growth hormones does this is worth to believe.
Please guide with your knowledge ,I know you can do.
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