Prolactinoma or high prolactin levels

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  • TakingChargeKrys
    TakingChargeKrys Posts: 1
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    Just found out I have high prolactin levels. After reading ur stories I'm wondering if this is the cause of all my weight gain over the past year. I had lost 60 lbs 2 years prior and kept it off with my lifestyle change and for no reason Jan of 2013 I began to gain with no reason and no matter how hard I worked out and even cut out almost all carbs I was still gaining. Wasn't until I finally told my doc about leakage from nipples a year ago that I wondered if something has gone wrong. Would love to friend you women and get more insight to ur stories and join in on the support. I'm new to MFP as I've been absent for years from it.
  • nayona
    nayona Posts: 3 Member
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    Hi, I recently learned that I have hyperprolactineamia. Its at 224. Its not a prolactinoma. I'm a diabetic since 2011. I also have been diagnosed with PCOS this year. Other hormones are slightly off too. My doctor has me on long release insulin, and cabergoline. I've always been obese but have been trying very hard to lose the weight over the past month. I've taken some time off from work to focus on just my health. I'm concerned because we're TTC and its obviously not working out.

    I work out 1.5 hours a day in the gym, eat healthy, and get plenty of rest. I haven't been able to lose a lot of weight so far and I'm concerned that my hard work will not result in good outcomes. I'm really glad I found this thread because it makes me feel less alone in this battle. Friend me so we can work together on this journey.
  • JenniferBartlow
    JenniferBartlow Posts: 1
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    I too have been diagnosed with high prolactin levels and also am hypothyroid. My endocrinologist has me on both cabergoline and Synthroid. I never had an issue with weight or loosing weight after having 2 children. Suddenly, my weight shot up 30lbs and I am no longer able to fit into most of my clothes. I just joined this website and am beginning to track my calorie intake. Please feel free to friend me.
  • angel_cloue
    angel_cloue Posts: 1 Member
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    Wow, this is insane that I stumbled onto this feed. I use to be in amazing shape never had any issue's with my weight at all. Then when I turned 20 I started gaining. I seen three different doctors, because my period had become spotty and I was gaining weight rapidly. They all said the same thing, its from working shift work and eating habits. One straight up told me I need to lose weight. Which is strange I eat really well, play hockey and soccer and really active. My periods then stopped completely, I was super tired and had to really push myself to do anything, doctors said the same thing, it was because of working shift work and put me on BC. I then moved so I started with a new doctor. She told me the same thing and kept me on BC. Once that doctor went on a mat leave I started with another doctor, while going through my medical history he decided to check into things, sent me for blood work, ultrasounds and finally an MRI, he also referred me to a gyno. It was the gyno who discovered my extremely high prolactin levels, in the 1600. She finally sent me to see an endocrine specialist who has been amazing. She put me on cabergoline, which has been helping with my energy levels. I no longer have to drag myself out of bed I actually am motivated to go to work and it dosnt kill me. I just hope the weight loss will start soon, once my normal cycle returns. Its really nice to hear about others who have been dealing with the same things that I have.
  • trojan_bb
    trojan_bb Posts: 699 Member
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    Sometimes. Used to have higher prolactin more in the past. Cabergoline is a great med and completely takes care of it.

    No idea if it's prescribed for women though.
  • ashleysteffens16
    ashleysteffens16 Posts: 1
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    I'm so happy I found this post. I had no idea so many people were going through the same thing I am. I gained a lot of weight really fast without changing my diet or exercise. I was just diagnosed and have only been taking cabergolene for a week. I haven't gotten my mri back but this has made me feel much less alone in this
  • nayona
    nayona Posts: 3 Member
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    Quick update from me. It's been a month since I started on cabergoline and my prolactin is totally under control now. Really excited. Also I've brought my sugar levels down to half of what it was a month ago. I have 50 points to go. I'm working out 1.5 hours a day and eating 1200-1500 calories. I hope I can bring my hba1c down to 7 so that we can start TTC. It's a tough journey but I'm glad I have you folks along for the ride. Friend me if you need motivation. Hugs.
  • Alehmer
    Alehmer Posts: 433 Member
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    Holy crap, I just got diagnosed with this, though I got the MRI back on Saturday that says I thankfully don't have a Prolactinoma. Just really high Prolactin levels. Yay for no testosterone :(

    I don't really have a weight problem per se, but I work out quite a lot and strictly control eating, so maybe that's masking it. Just noticed that my Libido basically evaporated about 3 years ago, unfortunately right when I changed another medication that has that rare side-effect (Stratera for ADD). Went through some pretty tough times with my wife (always stands by me, but lots 'o frustration) but very, very happy now that I have at least figured out the cause of my very low Testosterone. Wish like hell that I had gotten a blood test years ago.

    First appointment with the Endocrinologist next Wednesday, excited to finally get treated correctly.
  • PeachyKeene
    PeachyKeene Posts: 1,645 Member
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    In 2011, I created this thread. Wow! And I am still battling the same issues as I was then.:sad: :brokenheart:

    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.

    The only thing I haven't tried, breastfeeding or pumping, hmm bet that will take the fat. I have seriously considered pumping.

    Hey, maybe, I can sale the milk to hospitals for premature babies. :) Two positives out of a negative!!! jk:laugh:

    :drinker:
  • abbynormal1
    abbynormal1 Posts: 4 Member
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    I too have very high prolactin levels. I have done well, and lost about 30 pounds since last year and kept it off. However I can't seem to get below 180 and it has been like this for months. I am almost always under my calorie goal but can not lose any more weight and I think it is because of the microadenoma that I have. I start cabergoline today and I hope it helps me get to a healthy wright with diet and exercise. Has anyone else had good success using this drug?
  • Kittykat3940
    Kittykat3940 Posts: 1
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    I have high prolactin levels. I just got diagnosed with this problem yesterday. I have never heard of it until now. I went to the doctor about my period and found out that I had high prolactin levels. I also have been gaining weight. I have gained 28 pounds in the last 4 months and I work out everyday. I also have bad headaches and didn't know why until I read everybody's stories. Thank yall so much because I was starting to feel alone and depressed. I will keep yall informed as soon as I find out more. Thanks again.
  • nayona
    nayona Posts: 3 Member
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    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!
  • Ligenliefde
    Ligenliefde Posts: 28 Member
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    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.
  • RizanneLouw
    RizanneLouw Posts: 3
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    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...
  • Ligenliefde
    Ligenliefde Posts: 28 Member
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    Hi Rizanne. Nothing worked for me either until I tried keto. It's actually working!! :love:
  • cynderella333
    cynderella333 Posts: 1
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    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.
  • Ligenliefde
    Ligenliefde Posts: 28 Member
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    I agree Cynderella. Very frustrating and depressing. My one endo said the same thing (no reason to gain weight) and the other said of course it causes weight gain! Unfortunately the sympathetic one left town.:sad: I was convinced I was going to end up as a 2 ton lady insert on Youtube. Primalgenix (combo of keto, primal and clean living) is healing my body and my prolactin levels are falling without Cabergoline (which made me madder/ crazier than a March hare ). I'm feeling good for the first time in years. May be woth checking out.:heart::flowerforyou:
  • Brat442014
    Brat442014 Posts: 4
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    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?
  • swimmingblue
    swimmingblue Posts: 2
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    Hi, I was just researching if prolactin causes weight gain & found this thread. My prolactin levels escalate whenever I have extreme stress (relative dies, marrital problems, etc.) During that time I won't menstrate & pack on the pounds. Like 30 lbs in 2 months!!! But the weight doesn't ever come off once its there. I also have PCOS supposidly. Just not sure what to do with this information or how to make it work. Once the stress is over, prolactin goes back to normal, but the weight gain has already been done with no hope of loosing by diet. :-(
  • Ligenliefde
    Ligenliefde Posts: 28 Member
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    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:

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