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My prolactin level is pretty high but my doctor feels the cause is the pituitary tumor I have meaning it's a prolactinoma. However, I think it's the medications I am on causing the high prolactin. I started having high prolactin BEFORE starting Risperdal, so the only other reason I would think is Latuda. She wants to surgically remove the tumor but I dont know if that will make a difference if it's the medications I am on. I can't get off the medications. I am content with leaving everything alone, I am not lactating or anything, the only symptom I have is no period. What do you all think? Is high prolactin serious? What harm can it do?

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All I know is that I know someone online who has a macroprolactinoma and takes medication because of it.  I am pretty sure she never had surgery for it and still has the tumor.

 

ETA: Also she started losing the extra weight she'd gained after starting the medication. 

Edited by cara23

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It can cause calcium to leach from your bones and predispose you to osteoporosis.  You should get your prolactin under control.  

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I yield to cara and jam on the medical advice (as I have no idea), but I wish you the best,

Take care. 

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i would get a second opinion before having surgery. There may be an option of treatment with medication. My sister had a pituitary tumor removed ( it was causing Cushing's symptoms) and it is a big operation. If you do have surgery seek out an experienced surgeon. She is fine, much better than before surgery. Is your dr an endocrinologist ? That is one place to start.

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yeah my doc thought i had that too since i had a thyroid issue and hyperprolactinemia or whatever

he even did a brain scan

but they didn't see a tumor

so woot woot, i guess

 

i'm on latuda too

i've been on risperdal too

lots of other shit

i am sure there will be news to come about the adverse effects of psych meds on the brain and endocrine system

shit i might even be able to get in on a class action one day

hopefully i'm not too crippled by whatever side effect ails me

ha

 

my levels still fluctuate but they do seem to be a lot better since going off latuda and prozak

i used to actually lactate or squirt milk if my nipples got disturbed

but i just started latuda again less than a month ago

-knocks on wood-

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I don't think any opinion here should outweigh the advice of the doctor who knows you and your condition, but it's perfectly correct to ask your doctor to explain her reasoning, and which alternatives she considered and why she did not prefer them.

 

Given that I'm a former optometrist, my direct concern with pituitary tumours is whether that are affection the vision, and particularly the peripheral vision.  Unless checked for, this effect can be missed as peripheral vision loss does not shout out its presence.

 

Chris.

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I was actually seeking out this forum for a similar issue.  I've had strange periods lately and my endocrinologist did some bloodwork and found high prolactin levels.  In my case, I'm only on Lithium and Seroquel, neither of which usually have that effect, so she ordered an MRI.  Turns out I do have a small pituitary tumor and my endocrinologist wants to treat it with cabergoline.  I have an appointment with my pdoc on Monday to talk about it.  The medication shrinks the tumor but doesn't remove it.  

 

It looks like the meds that treat prolactinomas can also have psychiatric side effects, so maybe that's what your doctor is concerned about?  

 

In any case, I agree with the above posters that it's worth asking why she wants to do surgery vs medication.   

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I have a prolactinoma as well, managed with cabergoline and periodic MRIs/checkups. The amount of cabergoline I am prescribed is extremely small (0.5mg twice a week) and I haven't experienced any major side effects, just occasional dizziness. It is certainly worth it to ask about trying medication before surgery. I also wanted to leave the tumor alone (all of my friends were very jealous of me for not getting my period) but, as mentioned above, high prolactin can increase your risk of osteoporosis and if the tumor grows it could press on your optic nerve and affect your vision. 

 

Also, don't be afraid to ask for a second opinion. My first endocrinologist opted to take me off my meds and periodically test my blood over the course of 3 months rather than give me an MRI, and I really regret going along with this plan -- I was severely depressed and even more anxious about my health over the course of those 3 months. 

 

Let me know if you have any questions that I might be able to answer!

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My MRI showed the tumor is the same size as it was in 2012, so my family doctor said no to surgery. So I expected her to possibly prescribe the med for it, and she said no to that to and tried to tell me to get off Latuda. Well my pdoc doesnt think its the Latuda causing the high prolactin so she's keeping me on it. I see pdoc on Monday to discuss this further. So frustrating! 

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My prolactin level is pretty high but my doctor feels the cause is the pituitary tumor I have meaning it's a prolactinoma. However, I think it's the medications I am on causing the high prolactin. I started having high prolactin BEFORE starting Risperdal, so the only other reason I would think is Latuda. She wants to surgically remove the tumor but I dont know if that will make a difference if it's the medications I am on. I can't get off the medications. I am content with leaving everything alone, I am not lactating or anything, the only symptom I have is no period. What do you all think? Is high prolactin serious? What harm can it do?

In fact having high Prolactin levels is quite concerning. It affects your health negatively, in a number of ways. You may be quite happy not to have your period. However, this is a signal that something is out of balance in your endocrine system. Other things like loss of sexual function, infertility, obesity and excess androgen production (which will cause you to grow facial hair, and the hair on your head to thin). Acromegaly frequently occurs, along with weight gain. In this disorder feet and hands grow, the neck becomes thickened and facial features become enlarged/distorted. You may develop high blood pressure, and/or diabetes.

While these things may not seem like the end of the world, they come as a constellation. This is a pretty horrible group of symptoms to do "nothing" about! That said, it does pay to be conservative with one's dose of Cabergoline. It IS a Dopamine Agonist. Pituitary tumors are only curable with the medication, surgery is not that exact! Any Dopamine Agonist can cause mood changes AND can be troublesome for folks who already take antipsychotics for their struggles with mental illness. It's a "go slow and watch carefully" situation in those cases. Be aware. But don't sit and suffer...please.

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My prolactin level is pretty high but my doctor feels the cause is the pituitary tumor I have meaning it's a prolactinoma. However, I think it's the medications I am on causing the high prolactin. I started having high prolactin BEFORE starting Risperdal, so the only other reason I would think is Latuda. She wants to surgically remove the tumor but I dont know if that will make a difference if it's the medications I am on. I can't get off the medications. I am content with leaving everything alone, I am not lactating or anything, the only symptom I have is no period. What do you all think? Is high prolactin serious? What harm can it do?

In fact having high Prolactin levels is quite concerning. It affects your health negatively, in a number of ways. You may be quite happy not to have your period. However, this is a signal that something is out of balance in your endocrine system. Other things like loss of sexual function, infertility, obesity and excess androgen production (which will cause you to grow facial hair, and the hair on your head to thin). Acromegaly frequently occurs, along with weight gain. In this disorder feet and hands grow, the neck becomes thickened and facial features become enlarged/distorted. You may develop high blood pressure, and/or diabetes.

While these things may not seem like the end of the world, they come as a constellation. This is a pretty horrible group of symptoms to do "nothing" about! That said, it does pay to be conservative with one's dose of Cabergoline. It IS a Dopamine Agonist. Pituitary tumors are only curable with the medication, surgery is not that exact! Any Dopamine Agonist can cause mood changes AND can be troublesome for folks who already take antipsychotics for their struggles with mental illness. It's a "go slow and watch carefully" situation in those cases. Be aware. But don't sit and suffer...please.

 

 

Prolactin levels go up if a woman is pregnant and breastfeeds, and I don't think they all have the/some of the symptoms you talk about in your post.  Millions of women are pregnant/become pregnant.  I agree if you aren't pregnant and breastfeeding that high levels are to be concerned about, but how is high prolactin (from any other reason) different than when a lady is pregnant/breastfeeding?

 

http://breastfeeding.about.com/od/breastfeedingbasics/g/prolactin.htm

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I don't know why Melissa, but it is.  All of those things are true, and it's why high prolactin should be addressed in a woman who is not breastfeeding.  For me, it's also concern about my period stopping and the impact all of this has on bone density, as osteoporosis runs in my family.

 

https://en.wikipedia.org/wiki/Hyperprolactinaemia#Symptoms

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They need to do an MRI scan to see if there is a tumor.  Either it's there or it isnt.  If it isn't there... NO SURGURY!!!! 

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