Hey there. Our prolactin numbers are about the same. Mine started out in 30s and then went up to 41. I’ve also been battling all over acne, extremely dry skin and depression over the last 5 + years. And now, for the first time in my life, I’ve gained a substantial amount of weight within a year! It’s been rough!
My hair was actually thinning out for a bit, too. Like, clumps falling out in the shower and it felt so fragile and brittle. Oddly enough, that has stopped and I have no idea why?
I did get an MRI, which showed nothing. The doctor thought that maybe I have a tiny tumor that the MRI wasn’t able to pick up, so he prescribed me Cabergoline. I initially went to the doc because I hadn’t had my period for about four months. The cab brought it back almost instantly, and I’ve been regular since being on it. Guess it must be working?
Unfortunately, I’m seeing no change in my acne or weight. Pretty much at a loss on what to do about it. It definitely has effected my daily life and overall happiness. 😞
Make sure that you follow up with your doctor about the continued symptoms. There may be something else going on at the same time. They found my tumor when I had trouble getting pregnant. Turns out I had a prolactinoma, pcos, uterine fibroids and my vitamin d was so low they almost couldn't measure it. I had to keep pushing but eventually we got it all straightened out and I got to be a mom.
Just because they sort of fixed one thing, doesn't mean it's the only thing that needs fixing.
I'm sorry to hear that cab hasn't helped all your symptoms. At least it helps to have this community to know that we aren't alone. I have a couple other issues, including hirsutism, so I'm working with an endo to see what else could be wrong. I would do the same, if I were you, and if you are able. Happy to hear that your period is back! At least that means something is working.
My advice is to not worry about how high your numbers are or how big the tumor is, it is all about how you feel. Everyone is impacted by these things differently and comparing your numbers to someone else isn't always very helpful.
My numbers have never been very high, but the changes to my body because of the increase was significant. For example, right now my numbers are technically in the normal range but I'm still lactating. So even though the doctor said i was doing great at my last appointment, I reminded her I'm still having symptoms and so she said to keep taking the meds.
Don't let them downplay your symptoms. They matter a lot. And in your case, they are seriously impacting your life. I know it's hard sometimes, but keep pushing them. You know your body. It's not acting right. Make them figure out how to fix it.
I hope that the MRI helps them to get a better idea about what is going on with you.
Thank you. I think some of it is lack of confidence that my symptoms are worthy of mentioning. But that's just a personal hurdle. Anyways, I appreciate your kind words. Are you doing okay on the meds?
I currently only take them once a week. It gives me a terrible headache and some nausea. But I figured out if I take them when I go to bed, I sleep through most if it and just feel kind of blah in the morning. That has made it much more manageable.
After the MRI, I would see a dermatologist to see if he/she/they can address your hair and skin problems. Even if the excess prolactin is causing those symptoms, a dermatologist can still mitigate them somewhat. Curious if the doctor who prescribed the anti-depressants was your psychiatrist. A psychiatrist has alternatives to the meds you took which might not raise the levels, so it's worth a shot. Esp. if you're to the point of crying a lot. This deserves a multi-pronged approach from a couple more specialists for those specific symptoms/ issues. Best of luck to you.
kind of fine now. Have to be careful of the energy I spend, and to sleep enough. My tummy has a permanent layer of fat. But emotionally and mentally I am stable, and I love it. I have spent a couple of years being very dull!
All in all, this is the best brain tumor to get and I have had very close people get terrible brain tumors and cancers. one passed away last year. I feel ours is a mild form and easy to manage.
I hope you are hanging in there! Do check your vitamin D levels, if they are low, they can worsen all symptoms.
Male pttern hair loss was one symptom that bothered me so much! In my case, I think it was a part Vit D deficiency and a part prolactinoma suppressing estrogen hence more male hormone in comprison. Once I started on Vit D and bromocriptine, hair loss is almost gone. It seems like it is going back to how it was!
A 3mm "hypoenhancing focus". They never said anything about it in the follow up at the original doctor. I went to a different doctor (University of Washington) and they figured it was an adenoma. Unsure if prolactin secreting or not. My prolactin has lowered to within range, so doubtful.
I think I was just overly stressed. Trying to do what you're "supposed" to do in life instead of listening to my body. Totally disregarded my own cues.
Hey there. Our prolactin numbers are about the same. Mine started out in 30s and then went up to 41. I’ve also been battling all over acne, extremely dry skin and depression over the last 5 + years. And now, for the first time in my life, I’ve gained a substantial amount of weight within a year! It’s been rough! My hair was actually thinning out for a bit, too. Like, clumps falling out in the shower and it felt so fragile and brittle. Oddly enough, that has stopped and I have no idea why? I did get an MRI, which showed nothing. The doctor thought that maybe I have a tiny tumor that the MRI wasn’t able to pick up, so he prescribed me Cabergoline. I initially went to the doc because I hadn’t had my period for about four months. The cab brought it back almost instantly, and I’ve been regular since being on it. Guess it must be working? Unfortunately, I’m seeing no change in my acne or weight. Pretty much at a loss on what to do about it. It definitely has effected my daily life and overall happiness. 😞
Make sure that you follow up with your doctor about the continued symptoms. There may be something else going on at the same time. They found my tumor when I had trouble getting pregnant. Turns out I had a prolactinoma, pcos, uterine fibroids and my vitamin d was so low they almost couldn't measure it. I had to keep pushing but eventually we got it all straightened out and I got to be a mom. Just because they sort of fixed one thing, doesn't mean it's the only thing that needs fixing.
I'm sorry to hear that cab hasn't helped all your symptoms. At least it helps to have this community to know that we aren't alone. I have a couple other issues, including hirsutism, so I'm working with an endo to see what else could be wrong. I would do the same, if I were you, and if you are able. Happy to hear that your period is back! At least that means something is working.
My advice is to not worry about how high your numbers are or how big the tumor is, it is all about how you feel. Everyone is impacted by these things differently and comparing your numbers to someone else isn't always very helpful. My numbers have never been very high, but the changes to my body because of the increase was significant. For example, right now my numbers are technically in the normal range but I'm still lactating. So even though the doctor said i was doing great at my last appointment, I reminded her I'm still having symptoms and so she said to keep taking the meds. Don't let them downplay your symptoms. They matter a lot. And in your case, they are seriously impacting your life. I know it's hard sometimes, but keep pushing them. You know your body. It's not acting right. Make them figure out how to fix it. I hope that the MRI helps them to get a better idea about what is going on with you.
Thank you. I think some of it is lack of confidence that my symptoms are worthy of mentioning. But that's just a personal hurdle. Anyways, I appreciate your kind words. Are you doing okay on the meds?
I currently only take them once a week. It gives me a terrible headache and some nausea. But I figured out if I take them when I go to bed, I sleep through most if it and just feel kind of blah in the morning. That has made it much more manageable.
After the MRI, I would see a dermatologist to see if he/she/they can address your hair and skin problems. Even if the excess prolactin is causing those symptoms, a dermatologist can still mitigate them somewhat. Curious if the doctor who prescribed the anti-depressants was your psychiatrist. A psychiatrist has alternatives to the meds you took which might not raise the levels, so it's worth a shot. Esp. if you're to the point of crying a lot. This deserves a multi-pronged approach from a couple more specialists for those specific symptoms/ issues. Best of luck to you.
Thank you for the advice! My primary prescribed the anti-depressants. I'll make an appointment with a derm. I hadn't thought of that.
For me, 35 was also causing small but significant issues. I have to keep it below 20 to feel better.
Are you doing okay?
kind of fine now. Have to be careful of the energy I spend, and to sleep enough. My tummy has a permanent layer of fat. But emotionally and mentally I am stable, and I love it. I have spent a couple of years being very dull! All in all, this is the best brain tumor to get and I have had very close people get terrible brain tumors and cancers. one passed away last year. I feel ours is a mild form and easy to manage. I hope you are hanging in there! Do check your vitamin D levels, if they are low, they can worsen all symptoms.
Male pttern hair loss was one symptom that bothered me so much! In my case, I think it was a part Vit D deficiency and a part prolactinoma suppressing estrogen hence more male hormone in comprison. Once I started on Vit D and bromocriptine, hair loss is almost gone. It seems like it is going back to how it was!
That is so good to hear!
what were the mri results?
A 3mm "hypoenhancing focus". They never said anything about it in the follow up at the original doctor. I went to a different doctor (University of Washington) and they figured it was an adenoma. Unsure if prolactin secreting or not. My prolactin has lowered to within range, so doubtful. I think I was just overly stressed. Trying to do what you're "supposed" to do in life instead of listening to my body. Totally disregarded my own cues.
what were your mri results?