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541196 tn?1293556536
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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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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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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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?1453836403
I suggest you get another opinion. I think your instincts are correct.
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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?1453836403
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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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 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?1453836403
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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596605 tn?1369950227
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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657231 tn?1453836403
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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Tell me more about soy and pt !  Thanks !
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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?1453836403
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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4957593 tn?1361580261
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?1453836403
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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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?1453836403
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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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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657231 tn?1453836403
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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6699771 tn?1471442915
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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657231 tn?1453836403
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?1453836403
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?1453836403
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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8149410 tn?1399087612
Mine was 163 at diagnosis -- tumor 6-7 mm

Symptoms in hindsight were low libido, crazy mood swings, hot flashes, achey 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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657231 tn?1453836403
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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hi i had ablood test and has come back as high prolactin not sure how high was jus told i need another test this wk was shocked as they told me the results would take a wk and they phoned the nxt day,, i was diagnosed with fibromyralgia 6 years ago but  doing research and reading the comments on here i am wondering if i ever had that at all. im jumping the gun a bit as levels maybe normal tomo,
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hi i had ablood test and has come back as high prolactin not sure how high was jus told i need another test this wk was shocked as they told me the results would take a wk and they phoned the nxt day,, i was diagnosed with fibromyralgia 6 years ago but  doing research and reading the comments on here i am wondering if i ever had that at all. im jumping the gun a bit as levels maybe normal tomo,
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657231 tn?1453836403
This is kind of a messed up thread - many stories so hard to follow a new one.

But many a pituitary patient is diagnosed with fibro, myself included.
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At age 7, my daughter began gaining weight for no reason. No dietary changes. after a year and a half, she had gained close to 28 pounds. Her pediatrician assumed it was a fatty diet, and no amount of explaining she didn't overeat would make him believe me. General blood work came back normal. By age 10, we found a pediatric internist who would listen. Looked at photos, listened to everything I said and agreed...this was not dietary related. She immediately ordered more intensive blood work and cortisol testing. A higher than normal prolactin level was noted and along with the other symptoms, made an initial diagnosis of a pituitary tumor since her vision had also become worse over the last year, with a major prescription change. The MRI was without contrast...and showed nothing. We were referred to an endocrinologist who discounted the lab results as a fluke, wouldn't listen to anything I said and was only concerned about blood sugar levels because she was a large child and concerned she had diabetes. Her glucose tolerance test came back normal. She made some outrageous claims that her prolactin level may have been higher in the other tests because her clothing could have been rubbing against her breasts?  The endocrinologists only answer to the massive weight gain ( she was averaging 5 -8 pounds a month with me managing her food intake) was dietary. She would not listen to me and said this was just her "body type". Understand, this wasn't just holding a little weight. She would hold fat in odd places. She was in the 95th percentile as an infant and toddler as being petite and small... and suddenly, it was like her body was becoming enlarged with fat for no reason. Everything enlarged. No one in our family had this issue. It was something we couldn't explain genetically.  After being told we needed to see if she "leveled out" into puberty, I had no other resources after we lost our insurance. In an effort to be supportive, I  went on a "health diet" with her. I lost 15 pounds...she lost 3 and that would fluctuate up and down with no dietary changes. She had ZERO metabolism. Then we lost insurance for almost a year. Fast forward to now...age 15. 5'4 and 225 pounds. I took her to a new DR, she ran more tests.  High prolactin still. Not a fluke as the endocrinologist had said. This new DR order another MRI with contrast... and this one found a microadenoma. We await a neuro surgeaons call to see if he will take her case. Thankfully, we are fully insured now.  My frustration is knowing, she has had this all along...and a specialist who should be more concerned and know this was not normal... sent us home saying all we needed was a dietician. Our journey with all of this has just begun in understanding what exactly is going on with her body and how it can be fixed. As I read through the posts on this thread, it occurs to me, she may very well have more than a tumor increasing her prolactin level. The weight she is carrying seems akin to Cushings...but no abnormal levels in tests. IT does help to read and learn. Everyone is very different. And finding a DR who is a pediatric specialist in endocrine disorders, specifically a neuro-pediatric endocrinologist,  is a struggle.  It's especially hard when you see your loving a spirited kid suffering.
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657231 tn?1453836403
I had Cushing's myself.
There are good doctors out there, but they are hard to find. If she is cyclical (episodic) then it may be hard to get the high's in testing.

She needs a pituitary endo - have you found the magic foundation? It would be so helpful to start a new thread. These old mixed threads are so... frustrating.
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Please someone help. My wife is pregnant and stop taking bromocriptine her prolactin do level is 500, she is 9 weeks is this level not common especially someone with a pituliary tumor?
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657231 tn?1453836403
I assume she is being followed both my her neuro-endo and a high-risk gyne?

She needs to be considered high risk, so she needs close monitoring. Was the tumor visible before she got pregnant.

Sad you did not start a new thread, this is a very confusing old thread...
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Hi do you mind me asking how you found out about it hemorhagging?
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657231 tn?1453836403
That person last posted in 2009 so may or may not respond in this confusing, mixed story thread.

You can tell on the MRI if the lesion has bled. It shows.
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I was diagnosed with macro prolactin pituitary tumor in 2004. It affected my vision because it was pressing on my optic nerves. I was tired all the time my head was always hurting me I had headaches I was taking bromocriptine in and I couldn't tolerate it so they switch me to Dostinex which I couldn't tolerate either I end up having surgery in 2004. It's now 2016  and for the past year I've been suffering with high prolactin again I'm getting headaches I'm tired all the time I'm getting hot flashes I'm getting depressed and very moody I had multiple MRIs done since 2004 and all they say is they think it's scar tissue. My period stopped in November so I've been having blood work done to find out my prolactin's in the 90s so my Endo chronologist thinks that it might be a tumor that we can't see right now I'm starting Dostinex tomorrow hopefully I can tolerate it
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