× These pituitary tumors (also called adenomas) secrete excessive amounts of prolactin and are the most common type of pituitary tumor seen clinically.

Prolactinoma stories

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Replied by pnaadmin on topic Prolactinoma stories

Thank you for posting an update. It is always a comfort to know you are not alone. The PNA also has a couple of Facebook Support Groups, here are  links to the groups. The first link is a group for patient and the second is for family members and friends of patients. Both groups are closed groups so only members can see the posts. 

Pituitary Network Support Group

Pituitary Spouses and Family Support Group

Feel free to request to join and one of us will approve it as soon as we can.
2 years 2 months ago #10761

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Replied by BflyLady on topic Prolactinoma stories

Update in case anyone else shows up here. My Rx dose fluctuates, as does the price; prolactin finally in normal range and tumor "stable" (didn't grow or shrink the past few years). Getting used to the fact this is for the rest of my life; not thrilled but still thankful and managing :) I'm still surprised there aren't more people posting here, but I did find a group on FB; you can search for prolactinoma there. It's comforting to find people in the same boat living out their lives too, for better or for worse.
2 years 2 months ago #10760

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Replied by jude on topic Prolactinoma stories

thanks for your story! I don't know if I have prolactinoma, I'm going for an MRI this afternoon. I maybe shouldnt' have joined this forum without knowing, but I'm an 'I like to be super well-informed' sort of person. Also it's soothing to read about people who've got the diagnosis and their lives are ok.
At this point, I'm in a denial/relentless optimism phase, where I'm going 'maybe the tumour is real and it's sitting on my digesting nerves and for the REST OF MY LIFE I'll be able to eat gluten and lactose and fructose and tolerate caffeine and I'll go and sit in Paris and eat croissants with jam and butter and coffee'. I know this is highly unlikely. But comforting.
If it's not a tumour then maybe I'm just getting old and sensitive and have gone into early menopause. Who knows...
2 years 2 months ago #10757

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Replied by BflyLady on topic Prolactinoma stories

Macro prolactinoma stories are so rare to find (at least I've had a hard time finding many) so I joined PNA today to share my story in case it helps someone else on the same quest.

I was diagnosed with a possible micro prolactinoma in 2003; I read recently that only 5% grow up to be macros :) and I assumed after a few endo visits that mine was kind of a non-issue since fertility was no longer a concern for us. But then last November the tumor showed up on an x-ray for possible ortho work.

Short story: bromocriptine was working - prolactin started at about 2500 last December, since then dropped to about 500 then 100s, but last week's was back up in the 300s. Disappointing :( I just wish I had a clue about what to expect long-term. I have a friend with acromegaly who has so many people and so much info available to her; I'm glad for her, but wish I could find more life stories on mine.

I was starting to get used to the idea that I'll always have this thing in the middle of my head; it was easier when I thought my 3 pills a day would maybe keep it at bay the rest of my days. But I'll learn to adjust and will just see where the ride takes me. I have a very capable endo now, and I'm so thankful for that. I'm also very thankful that the ortho found it before I had any vision problems. I can't say what other effects the tumor may have caused for me - what's just aging and what's from everything else that's going on with my health the past few years? It will take time to sort that all out.
Last edit: 4 years 7 months ago by BflyLady.
4 years 7 months ago #10343

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Prolactinoma stories was created by mishe


I have had a prolactinoma for about 15 years. The last time I had an MRI my tumor was undetectable but my prolactin results show it is still there. However, I have managed to have a fairly normal existence and I wanted to share some of my story, in hope that may be relevant to others and I am hoping that some people may be able to share with me some things about theirs (here or via email)

I saw a Naturopath who was a specialist in hormones and she shared with me that she has seen this tumor regularly in young girls who excessively exercise and don't consume enough protein. So I started a high protein diet. I had been vegetarian for over 6 years and I even started to consume organic liver. This helped my menstrual cycle return to normal almost immediately alongside the Cabergoline I was taking weekly. I got some strength back and my energy started to return within 3-5 months. I also took Chaste tree in the morning to help with balancing my hormones.

Everyone's journey is personal and I don't expect that my journey will be the same as anyone elses, however I am curious to know whether there are any similarities between my journey and anyone elses. At the time of receiving news about the tumor, I started researching a lot of different things.

When I was diagnosed, I actually felt a relief. I had felt quite lost at that time and the tumor felt like a good excuse to leave behind an old life and start anew. One thing I realised is I hadn't cried in a very long time. So I let myself cry again. I read that prolactin is found in tears and although this could mean nothing, I found it interesting that I hadn't been crying for so long and wondered whether this was a very small part of why I had a brain tumor.

Over the past 15 years, I'm lucky to say I haven't had a lot of struggle with my tumor. Yes, sometimes I get headaches and I can't handle as much stress as others seem to, but overall I feel well. I am prone to gain weight if I am not exercising regularly.

This is what I think about my tumor now-

I think it was a gift and it helped me to change my inner and outer world in many ways.

I think the tumor is linked to control and at the time I was diagnosed I wasn't experiencing a great deal of joy in my life. I have tried to work on both aspects.

I need to be asleep early. Too many late nights don't work well for me with this tumor.

I still haven't accepted it completely. I have contacted people who have had the same tumor and who managed to get rid of it. They told me at some stage they accepted it completely.

I can't eat sugar. At least not very much sugar.

I hope this doesn't all sound too airy fairy to anyone reading this. There are a lot of other things I would go into more if need be but this is enough here. If anyone would like to contact me further and share some of their thoughts, I'd love to hear from you. I'd actually like to do some research into other people's experiences and see if there are any common links between people's stories. If anyone is willing please let me know and I can provide my email address.

thanks if you've read all the way to here!

4 years 7 months ago #10342

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