Prolactinoma or high prolactin levels

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  • meredithgir199
    meredithgir199 Posts: 243 Member
    Has anyone tried the keto diet? Since starting the cabergoline my body is SO RESISTANT to losing weight. I've been contemplating keto. From what I've read it seems to be a responsive diet to those with pituitary issues.
  • faithwonderwings
    faithwonderwings Posts: 1 Member
    So happy to have found this! I’m 24 and had a tumour for 8 years now with my prolactin levels currently at 133,000 - all posts I see, no ones are ever that high. I’ve been on Bromocriptine, Cabergoline and Quinagolide and on all, my levels were up and down - but never went below 22,000. I’m now starting on Octrecide Injections + Cabergoline which isn’t licensed and is a trial.

    The last few years I have put on weight and I now think it has a lot to do with my levels being so high.

    I first found out I had it when I was 16 because I didn’t have any periods. Now, I have been on the Contraceptive Pill for 8 years but my Consultant says these are ‘withdrawal bleeds’ rather than periods.

    I need this under control - I won’t be able to have children if not.

    I’m going to add a few people on this thread, but if you see this - feel free to add me and send me a message.
  • aisjon10
    aisjon10 Posts: 6 Member
    edited January 2018
    I'm not the only one!! I’m 36 and haven’t had a period since I had my daughter 17 years ago. I finally went to the doc last year for a women’s wellness check and everything was cleared except for my prolactin levels. They were 1600. She wanted me to do a MRI but I can’t afford it. I’ve read that with levels that high it’s usually due to a tumor. Also, that people have taken prescription drugs and for some it help but some it didn’t. I’m really not big on prescription drugs so I did some research and found that Vitex (chasteberry supplements) can help with regulating periods and helping with the pituitary gland. I bought a bottle of 400mg capsules at the health food store and figured I’ll give it a try. I do have a little worry about the side effects because I’ve read that some of the women were experiencing negative side effects such as drepession but I’m hoping it won’t be an issue for me. Also, something weird that I noticed when my period stopped... I gained around 50 lbs and I started getting these small dark spots on my face, mainly on my cheeks. I did some research and they look very similar to seborrhic keratosis. Can anyone else relate to this?
  • manda2004lm
    manda2004lm Posts: 1 Member
    I too have a prolactinoma. I found out when I was 15, Parlodel gave me bad side effects. I went on Cabergoline and was fine for 10 years until after having my second child. They couldn’t get my prolactin levels back to normal so I had surgery to remove it when I was 29. My levels were normal, I had energy, was running and lifting weights every week day. I felt the healthiest I’d ever been in my whole life. MRI’s showed no residual tumor and I was very happy. Then 1.5 years later my energy was super low. My periods were all over and after another MRI found out the tumor grew back, smaller but another prolactinoma. This time around the Cabergoline makes me fatigued. Endocrinologist says it’s because I’m not working out like I was even though I walk 2 miles every weekday and eat healthy. I read Vitex berry helps so I started taking that along with the Cabergoline. My prolactin levels are finally normal but I’m still very fatigued and tired. I hope my energy levels return. This thread was very helpful. I’ll try the keto diet and see if that helps with my energy levels. Anyone else find a natural way to increase their energy?
  • ButterflyWine
    ButterflyWine Posts: 1 Member
    I can't believe that I've just found this thread! Was diagnosed with a 5mm prolactinoma back in September 2017 and have been on Cabergoline ever since. I've managed to lose around 2.5 stone in that time but only because I have been taking Topiramate for chronic migraine syndrome, which I was also diagnosed with. The Topiramate is no longer working as I suspect my body has gotten used to the dosage and my neurologist won't increase the dose (even though it isn't working for my migraines), so I'm back to losing no weight again. The Cab is not helping me to lose any weight at all, which I figured it would once my hormones started to regulate themselves? Perhaps they are not yet regulating normally? I have not yet had my first set of review blood test results back from my endocrinologist but I have had 1 period since starting the med in September so it must be doing something.

    I keep reading about the keto diet everywhere. There is an FB group called Keto 4 Neuro, which I joined but haven't been active in because I am still tentative. Does anyone have any experience of the keto diet for pituitary tumours and weight loss? It's driving me insane not being able to lose this weight - the only weight that I can shift is about 1lb if I literally eat nothing all day, every day - NO JOKE! - which we all know is unsustainable, not to mention unhealthy (and for the record, I tried it once but not intentionally - I was very depressed and couldn't eat for the depression and hey presto a 1lb loss after eating virtually nothing but air and mung beans and black coffee).

    Any info on keto would be welcomed.
  • jushobbs
    jushobbs Posts: 1 Member
    Hi, I am a post menopausal 51 year old, diagnosed with a microprolactinoma about 15 years ago. I’m also a PT and nutritional advisor.

    I was on cabergoline for 8 years after my scan and diagnosis. It bought my prolactin down to around 600 from 3000. I was taken off the drug, my prolactin rose to the 700’s but it was decided, because I have excellent bone density (strength training ladies!) and, apparently, had gone through the menopase according to my blood tests (despite - then - no symptoms) I was not put back on it. That was about 4 years ago.

    Since then the hot sweats have kicked in and my weight has rapidly increased, particularly this last year. I am about 2 stone over weight and feel like I am expanding daily, despite great exercise and diet!

    It was only talking to a doctor friend this last week that I found out raised prolactin directly and hugely affects weight! Yes, I’m post menopause and this may well be a contributary factor, but the body fat increase is rapid and clearly contradictory to my very healthy eating and exercise practices.

    Obviously, I’ve been researching like mad since and have booked an appointment with my gp. I will be asking for prolactin, thyroid (I know this is ok) blood sugar and growth hormone levels to be checked. I absolutely know my prolactin will be through the roof again so I will go back on Cabergoline (the doctor can prescribe this) and arrange to see the endocrinologist and have another scan (my tumour only shrank, it wasn’t eradicated).

    I know my stuff when it comes to food and exercising and have been so affected by this uncontrollable weight gain I hardly train anyone now because, if I can’t get the results from all this knowledge and hard work, how can I train others?! Confidence is at an all time low but now I have hope and will post back in a few months with any findings.
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