Hi - I'm 33, soon to be 34. I was diagnosed with microadenoma when I was 16. I was treated with parlodell, then dostinex with little effect. My prolactin remained elevated (hovering between 60-110). The doctors were increasing the dosage of medication in hopes that they would bring the prolactin down but it never happened. My periods were on and off, but mostly off. my endo recommeended that i start seeinf neurosurgeons in teh NYC area for a possible surgery when i tured 26 as i have expressed concern fhat i wi t be able to have kids and the meds dis t work in me. When I was 27 I finally found a surgeon that was willing to operate on my small tumor. He did i. 2007, recovery was quick. However the prolactin remained elevated yet MRI showed no remains od tumor. The meds also were not effective after the surgery ... Did anyone else experience elevated prolactinoma after surgery and no better results with medication?
Did you ever get a copy of your pathology? If not, I would. That would tell you a bit more about what was removed.
Prolactin can be raised by a prolactinoma, but also by another type of tumor on that area of the pituitary, as well as other abnormal hormones, like thyroid. So you have to get a thorough hormone check and sadly, you are still in need of monitoring even after surgery.
So, did you ever get seen at a pituitary center by a neuro-endo? Was your surgery done by an experienced pituitary surgeon? What is your testing showing now on your other hormones?
You need data - and so I would start by gathering up labs, pathology etc. so you have more information and get in to a pituitary center.
Sadly, the tumors can grow back - even right away.
Yes, i have seen all of the pituitary experts in the tri-state area, the top neuro-endo surgeons in NYC. My thyroid hormone levels are good, TSH, T3, and T4. i have all of my lab work history, all my MRI's, pathology as well (from what i remember it was a cyst not an actual tumor). So many doctors and experts have looked at my medical history/information without any concrete answers. I'm so tired and frustrated. They all recommend Dostinex but it does not work on me and they don't know why.
Can you tell me a bit more how thyroid impacts prolactin? is there another thyroid hormone that I should ask my doctor to have checked out?
i'm currently being seeing by doctors at Mount Sinai Hospital, this hospital is ranked as one of the top hospitals in the country in 12 specialties, Brain being one of them, and none of the doctors have any answers for me. they have my entire medical history from the beginning to the end.
Where else can i turn to if top hospital with top doctors don't have answers?
You have seen surgeons - but what about neuro-endocrinologists?
It is actually odd, to me, that your TSH is good. It is pretty normal after surgery that TSH as well as GH are lost. My TSH is .0006 - if I had a thyroid anyway, I would need thyroid meds just for that.
Was it a rathke's cyst? It really really really pays to get copies of everything. I learned the hard way that what I was being told was not exactly what was happening. Like I was told my tumor was 1mm - it was 6mm etc. I always get my blood work as I have been told it was normal - it was not.
Low thyroid can raise prolactin. If your docs have only run straight T4 and T4 and not the free type, not always accurate on what your thyroid is really doing. Plus antibodies should be run at least once.
Brain is different than pituitary. The endocrine system is actually not neurology and neurologists are not trained at all in pituitary or endocrinology.
I live in the same area as you- went to the same places. Alas, I had to travel. I went to the west coast and to this day I still have to travel to get care. I assume there are some decent docs around but I could not find them and still cannot. What a pain for those needing complex endocrine care.
I don't know/recall if i have seen a "neuro-endocrinologists", i didn't know there was such specialty and i guess i assumed that when my endocrinologists refered me to see a neurosurgeon (and i have seen a army of them), then that's who i should see.
if you don't mind, would you be able to recommend a neuro-endocrinologists that you have seen? it looks like you travel to the west coast to get care? if this is correct, would you be so kind and share your doctor's name and a phone number in the west coast with me? i'm desperate to get help, and if i have to travel then i don't mind that at all.
I will also follow up with my endo regarding T3 and T4 "free type" (?) and antibodies.
regarding my TSH and GH, yes that was a risk that pituitary will stop working post surgery and i will have to be on hormone therapy, however my hormones were normal post the surgery (except for prolactin), and my thyroid levels are controlled with Synthroid.
FYI, I have looked up antibodies and found few articles regarding "antiprolactin antibodies"... Is this what you meant!
I have called my endo and she doesn't know what antiprolactin antibodies are (is they weird??)
We're you treated for this ever? Am I asking for the wrong thing?
She did check for free t4, t4 and t3. She doesn't check for free t3 because that doesn't stay long in the system or something (not sure exactly).
I meant thyroid antibodies... eeek... There are a lot of auto-immune diseases and the one that effects the thyroid is called Hashimoto's (if hypo) or Grave's (hyper) so it pays to test as they can be hanging about even if you don't have obvious symptoms.
My doc tests me for free T3 always. It is what the thyroid uses. T4 is converted to T3 and free T3 is what the thyroid uses, not stores.
I don't think I even had anti-prolactin antibody tests.
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