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Prolactinoma - need advice on treatment


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Old 05-13-2017, 08:04 PM   #1
Jmf2osix
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Prolactinoma - need advice on treatment

Hi, this is my first time posting. I didnt see much on this topic and not sure if anyone out there will be able to help me, but I'm hopeful someone has some advice that will be useful.

In 2009 I was diagnosed with a Prolactinoma, all my doctors refer to it by different names so I'm not really sure if it correct to say adenoma, Prolactinoma, macroedinoma, so I just say brain tumor.

Nevertheless, my MRI determined it was 14mm wide and I had some moderate success treating it with Cabergoline for maybe a year and a half or two years and then I think my Endo pulled me off, I guess because I was "cured", I lost a ton of weight and my Prolactin levels had dropped from 16,000 (if that's possible I'm going by memory) down to in the 100 range and my testosterone went from a little over 1 free to over 3 ( if free testosterone doesn't deal in fractions but only whole numbers I apologize) I don't think I was in range at the time for a 31 y.o. male but I felt good.

Fast forward a few years and my weight started coming back, I became really depressed, started the Cabergoline again because my prolactin was elevated but I didn't have insurance so I didn't go in to meet with my Endo rather My GP talked to him and he told her what dose to put me at. Anyhow, I think I took it for 6 months and just didn't follow up with it because I'm not very good at follow through anymore. In fact, I'm not good at anything anymore.

Well, in January my doctor suggested we do a follow up MRI since I've never had one after the first because the copay was over $1k. But 100% covered with copays now.

So obviously the tumor is still there it had shrunk to 9mm probably on my first round treating it with the meds. My Prolactin isn't as elevated it's in the 600 range, testosterone close to 1. My health network now has a pituitary center so I went to see an Endo that specializes in this type of issue. He said he wanted to do surgery (he's not a surgeon) but then after my appointment he sent a follow up email stating I needed to start testosterone injections and that he thinks I have Adult Growth Hormone Disorder/Disease? But wouldn't know until I started testosterone but didn't mention anything about the surgery that he said he'd follow up with me on once he got all my tests back from the lab.

*sigh*...this is where I just give up when it comes to trying to treat my problems because for some reason it's just too difficult for me to navigate healthcare things if it's more than one or two visits to solve the problem. I'm overwhelmed, and I'm confused and so I just haven't done anything for two months since seeing the specialist. But I'm a mess emotionally and physically and I need help.

So, I'm just looking for advice from someone other than my doctors because i know what they want me to do I just don't know if I have asked all the right questions and if the course of treatment is what I want. I really don't want to be on testosterone for the rest of my life. I also want to know why he has said nothing about surgery but was gung ho when I met with him. Because to me I would rather have surgery to see if that would help so my testosterone production would kick back in naturally. Also, if not surgery, then why didn't he prescribe Cabergoline? He wants to see me in four months to see how the testosterone injections have worked, but that could also be time I could be taking the meda for the actual problem which is causing my body to have issues producing testosterone in the first place. So, I just do nothing and haven't started testosterone yet.

By reaching out to others I hope to get some feedback and help me navigate this better so I can deal with this and get better. But I want to make the right decisions the first time I make them. I don't want to be stuck going down one road and not understanding what I might be missing a better option by not exploring surgery. Thank you for taking the time to read my scatter brained post if you made it this far.

I just want to lose weight, I want to not be depressed, and I want to have a clear mind without any mental fog, and I want to have motivation back so I can start living life again.

Last edited by Administrator; 01-14-2018 at 06:20 AM.

 
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Old 10-17-2017, 03:38 PM   #2
TrulyBlessed79
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Re: Prolactinoma - need advice on treatment

Hello,
I have had 3 brain surgeries that have been dealing with my pituitary adenoma. I am also on the generic dostinex. I'm praying that I have another successful MRI in December. I had to have the surgery 3x because the tumor kept growing back. But I honestly think the last surgery I had at UAB was a success.

Depending on the size of your adenoma, will determine what type of treatment you should take.

 
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Old 01-13-2018, 05:58 PM   #3
CindyAnne1
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Re: Prolactinoma - need advice on treatment

What was the recovery from surgery like? That is my main fear, I have a non-functioning pituitary adenoma that I donít know yet if it requires surgery. It is impacting my hormones but nothing else.

 
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Old 01-13-2018, 09:19 PM   #4
TrulyBlessed79
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Re: Prolactinoma - need advice on treatment

It depends on what type of surgery they want to Do? I had what they called a transpneiodal surgery, if I spelled it correctly.

 
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