Prolactinoma or high prolactin levels

Cabergoline had worked for me. Took less than a month to get my levels down to normal. All the best to you. I hope it works wonders for you!

Hi there, sheez, it feels as if I am "home". I never got my period and no doctor actually thought of looking at my prolactin. Then, I accidentally overheard a colleague describing the symptoms his wife had and they struggled to fall pregnant, she got hers tested and it was elevated. So off to the Doc I went (January 2011), my prolactin count was 1680. Went for MRI and had a macro adenoma. I'm from South Africa and unfortunately our medical treatment isn't at the same standard as in USA and Europe. I get treated with Bromocriptine as that is what the medical aid approved. In 2012 we decided to try for a baby. In less than 3 months we were pregnant, now our baby girl is 11 months old. In February I went for another MRI and the growth decreased a bit. My meds ran out and I decided not to go back on the bromocriptine, but, I am once again struggling with my weight, I am depressed and feels as if I can't concentrate. I even did a bipolar questionnaire as I thought I might be bipolar and then I saw that bipolar like symptoms are elavated by adrenal/endocrine disorders.

Some days I get so discouraged, it literally feels I can't eat anything as I keep on gaining weight. Gaining weight makes depression worse - resulting in binging and purging.

This was God-send today, as I am very down and out. But after reading all the posts, I feel somewhat normal. Hugs to all of you...

I was diagonsed with prolactimona finally after I demanded more tests and an MRI. I got fat very very fast (like 30 lbs in 2 months) in my middle(I always gained my weight in my butt before but this was abdominal fat very werid) really fast and all my engergy disappeared. My blood sugar jumped up too, eye sight declined and my trigliceries jumped up all of a sudden. I was told I am eating wrong and then of course the I am depressed and should take depression meds (I dont like Dr.s much these days seems like they always want to take the quick way or cheap way and not really figure out what is going on). I tell people all the time you must do your own research and demand tests. I am on cabergoline but want to have my real body back and want to look at surgery. Saw 3 different endocrenologist over the last year and they all say no connection to weight gain and high prolactin or prolactinoma's even when I showed them the studies. So upsetting and frustraing.

In 2009 was when I found out. I have lost 85lbs but last summer and not taking my meds properly put on 30lbs within 3 months! Was going through a break up not eating, then eating...but do I gain so fast! My symptom was that my breast was leaking but think even in my 30's It was happening but just passing it off that I must be losing my mind! I have done research online and did find that weight gain and high prolactin does cause weight gain and other hormonal things..Why else would I have to have all my hormones checked just for prolactin/pituitary tumor?

The only type of diet that has worked for me is ketogenic. I don't have any explanation for this but I can tell you I tried EVERY DIET KNOWN TO MAN for 5 years and just got bigger and bigger! Once I came of cabergoline I started noticing that coconut oil gave me extremely painful engorged breasts and then discovered it is used to increase milk supply in breast feeding mothers. AHA, light bulb moment! I looked up what is used to increase breast milk and cut these out of my diet and then I looked at what is used to stop milk supply when a mother wishes to stop breast feeding, and started taking these. My doctor has put me on Vit B6 to try and decrease the prolactin levels which have dropped significantly. My symptoms have gone from 8-9/10 to 1-2/10 and I'm losing weight. So maybe worth doing some research and seeing what works for you.
Also, prolactin is a stress hormone so levels will increase when you're stressed.
Keto works wonders for PCOS too. Check out "primalgenix" on the net or on FB. Best of luck.:flowerforyou:

Vitamin b6 will lower high prolactin and also help your body balance estro&progesterone by producing more progesterone.

This blog is a Godsend! I NEVER thought that my prolactin issue was related to my weight gain. My benign prolactinoma was discovered 14 years ago after my bout with irregular periods. I completed medication therapy with cabergolin and it has thus since nearly disappeared. However, in the last several years I've noticed continued weight gain and I'm now at the heaviest of my life. I remember noticing weight gain in my late 20s. In my 30s I started working out with a trainer twice a week and started noticing weight loss but never realized until now that I was suffering from serious fatigue. A few years ago my endocrinologist told me that I had an elevated TSH, i.e., hypothyroidism. In May, I had my blood levels checked and my TSH was normal though my Thyroglobulin antibodies were slightly elevated (44) and my prolactin was elevated (64). It just dawned on me that my prolactin could be the reason for my consistent weight gain. So, I'm waiting to get my appointment to see my new endocrinologist so I can get this aspect of my health under control. In the meantime, I'm going to make daily exercise (and sleep) my top priorities - today I did 4.43 miles, over 10K steps! Trying to get up to 5 miles/day! :happy:

Also glad to have found this thread. I first found out about my prolactinoma 24 years ago, tried the one med that was available at the time, Parlodel, and couldn't stand it, so I had the surgery, which back then was awwwwful. Painful and fully metal packed nose for a week. Ugh, hellish. But thereafter I was finally able to conceive and carry my first child, so it was worth it. After child number 3, 11 years ago, it grew back. Before child no. 4 I had to go on dostinex to conceive and it worked again. Baby is now 3, and I'm petrified but I'm going to have the surgery again, this time of course endoscopic so I hope recovery won't be as bad. That's what they says anyway.

My prolactin level is 550. I've gained 20 lbs a year without changing anything. Number one reason to have the surgery for me is to stop the obesity. You guys here are not giving me much hope that once they debulk my macro prolactinoma, and get my prolactin levels down, that I will even lose weight.

But what I really want to share is this. I ate a paleo / primal diet, with plenty of good carbs for the gut bugs, before, during, and since my pregnancy. Before my pregnancy I couldn't lose weight no matter what I did. I was sort of at a plateau at the time. Since the pregnancy I've gained steadily no matter what, about 20 lbs a year. I'm obese at 217 lbs. Not enjoying it. DURING MY PREGNANCY, THOUGH, I LOST POUNDS EVERY SINGLE WEEK. Effortlessly. Why??? How???? I lost 20 lbs in those nine months outright, even though I was growing a healthy baby with pounds of extra fluids and blood. After I gave birth I was 20 more pounds lighter. So two weeks after giving birth, I was 40 lbs down from the day I conceived. I ate my healthy diet, adding some ice cream in the summer because my doc was freaking out about a steady weight LOSS in the second and third trimesters. The baby was perfectly healthy and I never missed a meal, nor was I sick and vomiting. Just every time I stepped on the scale I was lighter.

I believe the prolactin has been causing my weight gain. But what counteracted it while pregnant? I know there is such a thing as an hcg diet, but I'm not sure the hcg part is legit. However, something magical counteracted the prolactin and allowed my fat to roll off my body.

None of my doctors understand that or seem to care. But something while I was pregnant knocked the fat out. I wish there could be a discovery to help us with prolactin issues get to normal weights and be able to control our weight better with actions like other people can. Let me know if anyone figures it out. It was the coolest thing ever. And I was really afraid the weight would come back after pregnancy, and it did.

My story is so similar. Sudden 35lbs weight gain. Its like I woke up one day and I gained 35lbs. After 4 months of consistent working out and completely changing my eating, I hadnt lost 1 pound. I went to a new endo because my old dr told me to try harder. He discovered lumpy thyroid and elevated prolactin. MRI and ultrasound found no throid or pituitary tumor. I just started dostinex on saturday (.5mg 1x Week). My doctor made it clear that this was not a weight pill. Drs seem quick to dismiss the weight gain being related to high prolactin. But as we all have in common here, sudden weight gain and unable to lose when effort is made. If you think about it, if our bodies think we are pregnant it would make sense we gain and cant lose. I was really hoping to be able to take this pill and maybe see the results of all my hard work but I might just have to accept that I wont see results right away. I do have hope that my future efforts will work this time now that I will be normalizing my levels. Its such a blow though to think that no matter how hard you try it didnt work because your body is fighting against you. I know that when I look at myself I dont even recognize this body.

brave06605 wrote: »

Ligenliefde wrote: »

Hi everyone. I also have a prolactinoma that has been causing me some issues. Began with sudden weight gain , very painful breast symptoms and headaches. 5 years of going to doctors and specialists and being told that at my age (47) I should expect this, stop eating so much!! I did every diet know to man and was starving myself and still gaining weight!! Diagnosed a year ago and went on cabergoline. Unfortunately, because it works on the dopamine system in the brain it made me pre-psychotic and I had to stop it after 9 months. (That was not a fun time I can tell you but fortunately sane again):). Currently trying Vit B6 and zinc which is helping a bit for the symptoms, at least they're bearable now. Not keen to have surgery as it doesn't always seem to lower the levels??? I have been on a ketogenic diet for 6 weeks and have lost 4.5 kgs (9pds) so far which is truly amazing! Someone mentioned in an earlier post that with high prolactin levels excess glucose is converted to fat so maybe this diet is working because the body then runs on ketone bodies instead of glucose?? Dunno, but it's working.

Hi , my name david , and i have prolactinomia ...i tried ketogenic diet for 4 months and it is doing wonders. Would u please tell me about foods to avoid in my diet to decrease prolactin? Thank u and may god bless u for this valuable information...

PeachyKeene wrote: »

In order to lose any weight I have to eat a very, very reduced calorie diet. Such as 800-900 calories a day. Plus, I work out 1.5-2.5 hours 6 days a week. I have basically done my own study of what works.

That sounds familiar.

I don't have a prolactinoma, but I have other pituitary issues. I've had brain surgery three times and am lucky to be alive, but sometimes the amount of work that it takes to stay healthy is a bit discouraging.

Hi All!
I am so happy to have found this thread. In the last hour of reading everybody's stories I feel sad that there are so many people going through this but sort of happy to see I'm not alone! Here is my story..
At age 20-21, like most of you it was like I woke up one day and was 30 pounds heavier than my "normal weight" of 130-135. The weight gain was definitely rapid. I wasn't getting my periods either, although they were inconsistent before they stopped all together. Went to the doctor (who I had been seeing since I was 3 years old) and he did some blood work, said my thyroid levels were low. So he diagnosed me with hypothyroidism and prescribed me synthroid, said I should start loosing a healthy 8 pounds a month, and periods should return. After 3 months of no change in my periods and more weight gain, I went back. He tested levels again, said we need to increase the strength. Said to give the new strength about 6 months to start working. After 9-10 months still nothing. At this point I was probably about 170-175 pounds. I go back to the doctor again. He sends me for ultrasounds and diagnoses me with PCOS and says this is why I've gained all the weight because the thyroid levels were showing as "normal" at that point. I begged him to send me to a gyno and he asked why? I said well clearly something is wrong with my lady parts, so let's get a specialist involved. He refused, said I was a perfectly healthy girl and he refused to "waste the gynos time on a perfectly healthy girl". So he put me on metformin. I took that for about 6 months and stopped because it made me feel awful (nausea, vomiting). I went back to see the doc to tell him I stopped taking the metformin about 6 months after I stopped taking it. He sent me for more ultrasounds and calls me back to say that my ovaries are COVERED in cysts, and he goes "did I not tell you about the fibriods last time? I'm going to have to send you to a gyno for a hysterectomy." (I was about 185-190 at this point)
I was devastated and enraged at the lack of treatment I got from him. He said he would send a referral off to the gyno but it could take 6 months to a year to get in with him. It was at that point I took matters into my own hands. I had tried 2 other doctors over the course of those few years but neither would take me on as a new patient, they said my current doctor has all my history, it's better to stay with him.
I somehow overheard a colleague talking about some health issues she was having and her experience with her doctor. She gave me her info to make an apt. This was about March of 2015.
When I called to book an apt with the family doctor the receptionist asked the nature of my visit. I briefly told her what I'd been struggling with and she booked me in with the gyno immediately, before even seeing the family doc.
The family doc sent me for blood work and ultrasounds, said to see the gyno and follow up with her after the gyno appt. So I had the gyno appt (within 2 weeks of seeing new family doc) and his jaw literally dropped when I told him I had no periods for the past 4 years. He gently took my hand and explained how there is a higher chance of me having uterine cancer than not, as no periods for 4 years is a BIG problem. We did a biopsy right then and there. That sucked, big time.
Luckily, the results came back negative. (Thank goodness) The gyno and family doc agreed to put me on birth control for the hormones and PCOS. The gyno ordered more blood work to get after 6 months just to follow up and for some reason, jotted down to have my prolactin levels checked. It was March of 2016 when I finally got around to getting that blood work done. I met with the family doc and she caught the results showing high levels of prolactin. After she explained what that could mean, I did some research and I immediately knew I had a pituitary tumor. Almost every single symptom I had over the last 5 years could be explained by this tumor. The news was shocking, but very relieving at the same time, finally we knew what was causing all this stuff. I had headaches almost on a daily basis too, over the last 5 years. Any time I brought it up to my other doctor he dismissed it as I didn't drink a lot of water and he suggested to 'try to live a stress free life'. Pft, yea ok.
Anyways, sorry I know this is getting ridiculously long - I finally got in with an endocrinologist who has prescribed me cabergoline. I started 20 days ago, I take half a pill 2ce a week. I have to get more blood work done in a few months as he started me on a very low dosage and will likely increase the dosage over the next year. The tumor is 9mm and I obviously experienced a ton of hormonal issues. So far, no side effects to speak on other than a slightly upset stomach but nothing I can't handle.
I'm really hoping the cabergoline works for me, my boyfriend of 8 years and I would love to have a baby and I'd love to see this weight come off. I started working out and drastically changed my eating habits back in March of this year (2016) and I lost about 12 pounds on my own. After I lost the 12 pounds I seemed to plateau and no matter what I did I couldn't get any more weight off. Started cabergoline 20 days ago and have lost 2 pounds. I'm not sure if it's because I started doing more weights than cardio in my work out, or if it's the meds. I'm assuming it's a happy balance of both.
I apologize for the dreadfully long post but I figured it all mattered, and perhaps someone can relate.
Wishing all of you the best, and hope you get the treatment you need.
I hope this works for me..

Sending love ♡

Hey guys omg so apparently there's a lot of you out there with the same problem!!! I've felt like I've been making excuses forever now with why I'm not losing weight! Forever I thought I had hypothyroidism but levels were fine until I switched doctors and she said she thinks I have a prolactinoma.. that's when the research started. Before that point it was soooo hard to lose weight. It was right after my 2nd baby i noticed a huge change in my body. Started bromocriptine first in jan 2016 hated taking pills every night.. thought for sure I'd start losing.. I didn't. My levels started dropping then all of a sudden started skyrocketing again. so doc switched me to cabergoline. Thought maybe with my regular diet and exercise the weight would come off... nope gained another 16 lbs since.. I eating around 1400 cal a day exercising daily and watching my macros.. today my doc said my levels have been good now for 4 months so I can go off and see what happens. I pray they stay normal so I can cleanse my body of this medication.. my hair has been falling out and I get hot flashes, weird itchy legs after shower... a lot of other diff symptoms.. I'm normally 155 lbs at 5,9" and now I'm sitting at 189 soooo depressed. Apparently this medicine takes 10 days to fully leave your body so will do a post in next few weeks to let you guys know how I'm doing. Good luck to all you gals. This sucks big time ❤️❤️

Hi!
I'm currently in the same boat. I have not had a period at all scince having my daughter 7/7/15. My blood was drawn and showed high prolactin levels which my doctor thinks is why I'm not having my period. I have an MRI scheduled in a week to see the size and go from there....
Hopefully this will get under control and my period will come back as I would like to have another child.

I have a pituary tumor and would love to chat with someone! I have had it since 2008. Feel free to add me