Surgery is risky. If they slip or grind too much, life as you know it will be over. Its the "Master Gland", it emits the chemicals and hormones that control most things in your body.
The right dose will help you, longer term.
I take half a tablet every 2nd day and when taken off it I have quickly gone down hill. It will be 5 years in a few months and yes, I wish I was still "normal" but if none of us will ever know when these things developed, then was I really ever normal?
Regards to your physical appearance. Honestly, I know "having fun" at your age is what you want to do, but consider this....
Would it not be better to work towards finding someone who is willing to commit to you and respect you/understand and accept your condition, rather than more carefree relationships which go nowhere.
Please accept my apologies if I have read what you meant by that wrongly.
I know you are down about this right now so this may not be what you want to hear. If this doesn't go away after years of meds (which is apparently a very rare occurrence), then you will be fighting your weight for years to come.
Do you really want to get with someone who expects you to maintain a certain look and weight for years to come.
I know I get annoyed when my Wife says stuff to me about gyms and unattainable weights and physical features.
I am not happy with how I look but should I have to fight my body for the rest of my life to please others when my body has turned against me?
Should I get up at 4am and exercise for an hour so I can work harder for less results than others get.
These are the kinds of things you have to consider.
Remember, stretchmarks are stretchmarks, they are not burns or really that disfiguring as they fade after about a year.
When you are younger, you are sensitive to stuff like stretchmarks because pop culture portrays to you that you must be perfect to be deemed attractive.
You see actresses and models who look perfect and you never really get to see them without professionally layered make up or what they really look like unclothed since body doubles are often used.
Men dont want perfection. Women get told thats what we want and expect but the truth is we stand around and joke about people like that.
Who honestly wants to live with someone who is constantly self evaluating, counting calories, living at the gym and never there for you?
We all want to look and feel great, but the reality is things go wrong with our bodies and we have to deal with them.
We must at least feel blessed that we live in countries where we can receive medication. Imagine living in a village in a 3rd world nation where you are expected to work each day with all the symptoms and slowly going blind with no one to help you and diagnose a condition that can be managed with a small dose of a small tablet.
I am hope you take this advice the right way. Sometimes words in a forum can seem harsh or hurtful, but his is meant in love.
We live with a secret condition that no one sees and no one understands, especially sometimes those closest to us.
I think we all sometimes shed a collective tear over this condition but at the end of the day, we still have pretty good quality of life so we must be grateful.
I appreciate and thank you for your reply. Just to comment though, I have been in a loving and faithful relationship for about three years now and he does no care one bit about my weight and stretch marks and is understanding of my “condition”. I am not one to constantly self evaluate, count calories or live at a gym. I am saying that being this young I should not have to worry about having stretch marks alllll over my Boobs and having the only people to relate to are women who have had children. I don’t think you would understand that feeling. I should not have to worry on a day to day basis about leaking through my bra when I have not been and am not planning on being pregnant for a very very long time. I completely understand the risks of surgery, TRUST ME. I personally feel that living a truly happy life should not consist of taking harsh medications everyday that make you feel physically and mentally ill and that are not improving your “condition”.
If you knew me, I would probabaly be one of the most grateful people you would ever meet and I never ask for anything more than I need. I have been blessed with many many challenges in my life and this little one is just a number on my list, nothing I cannot handle. This forum is for SUPPORT. I came here to talk to people who understood what I was going through and maybe them sharing how they’ve gotten through or giving words of encouragement. I was not looking for a lengthy reply from someone who takes me as an immature, ungrateful girl who does not know much about relationships, support systems, societies view on women, and what truly matters in life. So my first post on here did NOT make me feel any sort of “support” at all. So I guess that will be my last post. Thanks.
I have known about my pituitary tumor for about 2 years now. No period still. First little bit I tried meds and had such a HUGE problem with Cabergoline and I was SO sick. I had to srop taking it only after a couple weeks. It Made my headaches worse, made me feel so ill, and it was so expensive! After a couple months of struggling with my weight, MASSIVE headaches for 3 years straight and crazy prolactin levels I decided to try keto. I finally lost about 15 pounds (i was 150 and lost to about 135). It’s not that I ever felt fat, I just always held so much extra water weight, especially in my stomach area. I was so tired of looking pregnant all the time!....definitely has helped.
After about a year of being on the ketogenic diet, I had another MRI and it looks like my tumor shrank! No meds. Just keto.
Mind you it’s still there, but my results said “a continued decline in size”
How awesome!
I also take turmeric (Curcumin) pills every day.
Anyone else try keto yet??
Last edited by Ketoforhealth; 07-30-2018 at 01:34 PM.
I have known about my pituitary tumor for about 2 years now. No period still. First little bit I tried meds and had such a HUGE problem with Cabergoline and I was SO sick. I had to srop taking it only after a couple weeks. It Made my headaches worse, made me feel so ill, and it was so expensive! After a couple months of struggling with my weight, MASSIVE headaches for 3 years straight and crazy prolactin levels I decided to try keto. I finally lost about 15 pounds (i was 150 and lost to about 135). It’s not that I ever felt fat, I just always held so much extra water weight, especially in my stomach area. I was so tired of looking pregnant all the time!....definitely has helped.
After about a year of being on the ketogenic diet, I had another MRI and it looks like my tumor shrank! No meds. Just keto.
Mind you it’s still there, but my results said “a continued decline in size”
How awesome!
I also take turmeric (Curcumin) pills every day.
Anyone else try keto yet??
I was diagnosed with a pituitary ademona (prolactinoma) in 2006, had surgery to remove it May 2006. Prolactin Level was 117 when I had the surgery. Over the last 12 years levels have been anywhere between 30 & 76.7 (highest it’s been since surgery ((Aug 2018)).
Symptoms before surgery were no periods, headaches, very irritable /moody, enlarge, leaky breast, and weight gain.
I am having missed periods now, (Every couple months) and my breast feel engorged, absolute impossible to loss weight.
I am 41 years old and in the military so I’m pretty active and eat clean most of the time. Im just starting the keto diet using cookbooks from Maria Emmerich, she is very interesting. And really dives into the science of it.
I’ve never been on the medications,I thought my dr. would put me on them this month because of my levels but he just told me when I feel like I can’t live with these side effects anymore we could start them. I would rather live with my current side effects that those from the drugs so I’m not planning on taking them anytime soon.
My dr. too, thinks I’m lazy and need to clean up my diet and exercise more. He doesn’t think there is a connection with weight gain and the adenoma. Just blames it on being 40. No mater what I do I can’t lose weight. That’s why I’m trying a Keto diet the Maria Emmerich way to see if I can heal my body and balance my hormones.
I mean if your body is producing prolactin, it “thinks” you are pregnant or breast feeding so doesn’t your body hold on to everything since it thinks you will be expending that energy while breast feeding. That makes perfect since I’m my mind. I just can’t believe every single one of us talk about weight gain and very difficult weight loss and there is still no connection made. Maybe our dr.’s should read this forum.
Hi,
I started a journey to lose 70 lbs in May of this year. It has been slow going and I’m trying to not get discouraged by that. It has been slow for me because of my high prolactin level. I am happy to have found this thread and hope others see it too and can participate/support.
I have been fat my whole life and was never successful at losing weight until I discovered my high prolactin issue and started taking Cabergoline in Jan 2007. By February, the weight started falling off as I continued to eat healthy and exercised 5x/week. I lost 130 lbs in about a year and kept that weight off until 2015 when life happened and I went off the Cabergoline.
From 11/2015 to 5/2019, I gained 70 lbs.
In May, I successfully started another weight loss journey. This time without Cabergoline. I realized when I went off the medicine that it was causing brain fog and I am not willing to live with that side effect. I had a pervious very bad experience with bromocriptine so that is not an option either. I have attempted the homeopathic and naturopathic routes, but they have not worked.
I went to see a bariatric doctor who explained to me why the high prolactin was causing the fat loss to be an uphill journey and told me that I either go on the medicine and lose 2x as fast or I don’t take the med and be patient. So far I have opted for patient. I’m looking for support because patience has never been a great virtue of mine.
I would also love to support others who are going through this with this same issue.
Thanks for reading.
Last edited by CoolChickie; 12-17-2019 at 07:57 PM.
Hi All!
I posted here back in 2014 because of my prolactinoma & weight gain (page 14 on here I think). I was given the drug cabergoline to help shrink the tumor. It is a STRONG drug (Ugh!). I was on a low dose. I had started losing weight, not sure how else to say it, but because of being in a new relationship and experiencing sexual activity with him that made me extremely hyper and motivated. Even afterwards I was more energetic, so I would work out and SWEAT. Sweating is what helps you lose fat, once you start sweating, keep going for a while. I had lost about 30 or pounds(within a year or so). But then I suddenly had a seizure. I think it was due to emotional stress, lack of nutrition, plus my body trying to use the cabergoline to fight the tumor. I had three more seizures within a few months of each other. I saw a neurologist and I was put on epilepsy drugs with the cabergoline. At first I stayed the same weight, being really weak from the seizures, but then the weight came back on. It’s been a rollercoaster ride. Seizures take all your memories and throw them in a blender and some fly out, never return, other’s are hard to understand and you can’t figure out the timeline. I can’t remember faces. Sometimes I can’t remember words. Sometimes I can’t remember whole days. I don’t know who people are until they remind me who they are. It’s confusing, I don’t know what I don’t remember. I have to keep a diary or I’d forget everything. I’d forget names, people, events, the day, what my schedule is, etc. I’m not taking cabergoline anymore and my periods are very sparse. It’s be 60 days since my last one. I had asked my endocrinologist if I could go off of cabergoline before I even had the seizures because of how it was making me feel but she said not until the tumor was gone. I don’t trust the drug anymore so I left that endocrinologist and the drug.
TL;DR?
It’s our hormones and our metabolism that we’re trying to improve and regulate. What affects your emotional/mental health can affect this tumor we have. Please, have good emotional support. The gym isn’t enough, even if you do see results.
Hi,
I started a journey to lose 70 lbs in May of this year. It has been slow going and I’m trying to not get discouraged by that. It has been slow for me because of my high prolactin level. I am happy to have found this thread and hope others see it too and can participate/support.
I have been fat my whole life and was never successful at losing weight until I discovered my high prolactin issue and started taking Cabergoline in Jan 2007. By February, the weight started falling off as I continued to eat healthy and exercised 5x/week. I lost 130 lbs in about a year and kept that weight off until 2015 when life happened and I went off the Cabergoline.
From 11/2015 to 5/2019, I gained 70 lbs.
In May, I successfully started another weight loss journey. This time without Cabergoline. I realized when I went off the medicine that it was causing brain fog and I am not willing to live with that side effect. I had a pervious very bad experience with bromocriptine so that is not an option either. I have attempted the homeopathic and naturopathic routes, but they have not worked.
I went to see a bariatric doctor who explained to me why the high prolactin was causing the fat loss to be an uphill journey and told me that I either go on the medicine and lose 2x as fast or I don’t take the med and be patient. So far I have opted for patient. I’m looking for support because patience has never been a great virtue of mine.
I would also love to support others who are going through this with this same issue.
Thanks for reading.
That is an impressive amount of weight to lose on your own, congrats!
I experienced the same kind of stuff with cabergoline, I didn’t like how I felt on it either, I had brain fog, episodes where I would just black out, wasn’t interested in food and forgot to eat often and finally had seizures. You’re not alone. I have about 45 pounds to lose to be a weight I was when I was healthy. I feel so sluggish and slow. Tired for no reason. Depressed. No motivation. No energy.
Sorry for not responding back in December, I had forgotten about this forum for years. I was reading old emails and found the email from when I signed up. It’s not a very active forum from what I can remember.
Currently, I’m expecting to be able to work out at home when I have the time & energy lol
I have heard turmeric helps. Whenever I eat things with turmeric or cilantro I feel a bit better and more aware or my surroundings than I usually am. Like it helps my brain function a bit. My bf lost a lot of weight on a keto diet and a strict gym regimen, but I've never tried it. I'm a carbaholic, so it would be hard for me to stick to.
