prolactin levels / pituitary tumor

[SarahB79]

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?

[Dani_beats]

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

[rumpled]

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.

[jade221970]

Hi do you mind me asking how you found out about it hemorhagging?

[rumpled]

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...

[Ant559]

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?

[rumpled]

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.

[AngieD123]

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.

[rumpled]

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.

[pixie03]

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,

[pixie03]

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,

[rumpled]

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.

[Joytoya]

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.

[KatesGram]

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.:)

[Tugtug]

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.

[rumpled]

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.

[Worrier14]

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?  

[rumpled]

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.

[sickandtired456]

My reply below was meant for you!

[sickandtired456]

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.    

[rumpled]

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.

[lola4686]

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.

[horselip]

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

[Pyr2]

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!!!

[rumpled]

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.