Prolactinoma and Ketogenics?


(Angela Wimer) #1

I first want to say, I apologize if this has been covered somewhere else. I have searched it and have come up with nothing. Therefore in my own mind I am kind of being a guinea pig for myself, and others. This will be a long post to include a ton of back story, and possibly TMI.

As a preteen it all started with my mother being worried that I hadnt started menstruating, and told me that if I didnt by my 15th birthday she was taking me to the doctors for testing. Well. It started on my 15th birthday. It was never ever normal. (I have a theory why it started then, this is when I started smoking marijuana). Also shortly after starting my periods I noticed discharge from my breasts, I wasnt going to tell my mom, no way. When I was 16 and 5 months I found out I was pregnant with my first child. My daughter was born 3 months early from pregnancy complications, and passed 2 days later. (That isnt the focus here, please read on). I continued to lactate for YEARS after this, and didnt have periods unless I was doing some serious weight training, and I’d only bleed during the latter half of these sessions. Doctors told me, I was causing the lactation, I must be expressing it, or letting boys play with my breasts too much. It was normal. I wasnt having periods because I was still lactating. So when I was 19, and me and my daughters father broke up, I went a year, with no one stimulating my breasts in any way. The doctors told me to wrap them tightly and try that for a month. Still. Same Problem. Met the man I married, we talked about having kids. I went to the doctor, had to break down in their office before I got any sort of answer… I was 27 at this point. After lots of tests, found out I have a prolactin secreting adenoma on my pituitary gland. Also known as a prolactinoma. They put me on bromocriptine, my periods returned, lactation mostly went away (it flares up when I am stressed) and in March of 2013 I discovered that I was pregnant. The day I discovered I was pregnant, I weighed 200 pounds. which was 100 pounds more than with my pregnancy at age 16. While I was pregnant I went on a strict “clean eating” style. Nothing processed, real whole food. (Little did I know it was Low Carb, not keto low carb, but no bread or pasta or added sugars, low carb). The day i gave birth, I also weighed 200 pounds. I yoyod between 150 and 220 pounds since giving birth. The doctors changed my medication to cabergoline, and we did many tests till it came out somewhat right for me.

I still lactate when I am stressed, but if I increase my medication, it activates the addiction place in my brain. I will eat without abandon, I will gamble like crazy, amongst other addictions (never drugs besides marijuana). I am now divorced, and ready to be the best mother that I can be. I started the Ketogenic way of eating February 1st and am down 18 pounds. However. Between my birth control and the cabergoline I have been on my period, since February first. I have read that birth control can cause the issue, but the doctors have me on it for estrogen, as my body doesnt produce it on its own, and my bones were suffering from it. So I fear going off my birth control. I have found no studies in regards to the effect of the ketogenic diet and cabergoline, though the first few weeks i was producing massive amounts of milk, i nearly gave up on ketogenics because of it.

My endocrinologist and my primary care physician both want me to stop ketogenics, but its the only thing that I have found, that I can stick to in losing weight.

I feel I’ve rambled on here… if anyone has any input. please!! also if anyone has questions, I’m happy to answer to my best ability.


(Banting & Yudkin & Atkins & Eadeses & Cordain & Taubes & Volek & Naiman & Bikman ) #2

First. Wow.

Second, I don’t have any specific advice other than ketogenic dieting, being high in fat, tends to help with the production of sex hormones, so you might see what your estrogen is really like under keto, and see how much of a dose of BC you actually need to regulate your other issue. It might could be that you need to downgrade your dose. I’m a guy on the Internet, but as a responsible one, I’d recommend talking to your doctor about some testing and perhaps regulating your medication a bit.

Alternatively, I might suggest reaching out to Mary Dan Eades of Protein Power. Dr. Mike has always answered my questions when he finds the time and collectively, they’ve been treating patients with LCHF forever.


(Angela Wimer) #3

I’ve spoken with my doctors and sadly wish I had more options, as they’ve always kind of avoided doing their jobs in my opinion. They want me to stop keto. Which I don’t want to. It helps with my arthritis and that’s very important to me.

I will try Mary dan eades if nothing more than to try to get some info to take back to my doctors. I really need one doctor that would be more ok with keto and being a guinea pig. After all. I’m doing it anyway, you think they’d be willing to just run tests along the way.

Thank you for your time. I really do appreciate someone just listening (reading) and giving me new ideas.


(Karen) #4

The female body is tremendously complex. I am so glad you have something of a diagnosis, and a treatment that is helping.

K


(Jay AM) #5

If you do a google search for “prolactinoma keto” or “high prolactin keto” there are a lot of things that come up, but, not a ton of conclusive anything. The medication you take is mentioned frequently as being helpful with the overall weight loss and lowering prolactin levels in those that just have hyperprolactinemia. So, keto may help somewhat lower your levels too and doesn’t seem to be counter to the medication you take for your prolactinoma.

You mentioned that your body doesn’t produce estrogen. Do you mean that your body only produces extremely low amounts of estrogen? One thing keto does help with is hormone balancing. Though, in your particularly uncommon situation, it may not be enough to completely help and medication will probably still be necessary. You should have an idea of when dosages might need adjustments based on going from your current normal to something else. Like, having an extremely extended period. An estrogen test may be necessary as you could be at high levels of estrogen due to the pills. If your period has only been spotting or very low occasional bleeding, this could just be a balancing act. Instead of being at 20g net carbs, you could consider slowly upping this amount to between 25g-50g for a couple of weeks to see if this changes anything for you. Otherwise, just stay the course and keep good logs for yourself of your symptoms and any changes. You’re not quite to fat adaptation most likely and, once there, you’ll probably see the most change.

There are a lot of doctors that are reluctant to recommend keto and a lot who don’t understand it. Really, you probably will not find support in this realm. Many don’t even mention their diet to their doctors if they are doing keto because it makes doctors reluctant to focus on anything else besides the diet. Basically trying to blame keto for everything new that’s wrong.


(Miss E) #6

Reading the part about “letting boys over stimulate them” made me soooo angry, partly because of the subtle slut shaming but mostly the lack of medical knowledge.

My recommendation would be stay on keto and go see a good acupuncturist/herbalist. Ignore whatever diet advice they give you but try the needles and herbs. It will help balance your hormones.

Sounds like there are issues with cortisol, insluin, and sex hormones possibly.

Also I just started taking ginger capsules to help with cortisol levels.


(Angela Wimer) #7

i had googled prolactinoma and keto, I didnt think of changing it up, I will definitely do that. Cabergoline has been mentioned to aid in weight loss throughout forums that do touch on hyperprolactinemia, but that hasnt been my experience with it.

As for the estrogen, its been years since i was tested medication free. I remember the doctor wording it as i had the hormones of a young boy at the prime of puberty, and since there wasnt any estrogen, chances of me going into osteoporosis early, were very high. I think estrogen was at zero, but again, i could be wrong, its been years since its been tested with no meds, so i dont really remember. Are you saying carbs might help the estrogen being possibly high currently?

and Lovethyself, I got so used to slut shaming having been pregnant at 16. I guess I dont even notice it anymore. I definitely have cortisol issues, I will try the ginger as well. Insulin I havent had tested, and sex hormones have been out of whack my whole life. I am not sure if “normal” is even possible for my body. But I’m trying!


(Jay AM) #8

Sorry, the increased carbs was about helping increase natural estrogen production. However, you don’t know what that is since you take estrogen. It’s odd that keto and your extended period coincided but, they could be just a coincidence. Or keto did some amazing estrogen production switch flipping and between keto and hormone therapy, you’re now too high. Women with PCOS on keto often see a quick return of their period because of the hormone production. It could be worth getting checked next time you go in.


(Angela Wimer) #9

i have an appointment planned in June, I typically do all that stuff around my birthday, just seems to work for me. I will have them check as much as possible. I also read that it could be the estrogen releasing from my stored fat. As i started birth control and gained a bunch of weight, so highly possible i was storing it along the way. Not sure how accurate the scales are that measure your body fat percentage and your water weight and all that, but in the 18 pounds of loss, according to my scale, i’ve went from 48% body fat to 35% body fat, so highly possible its just from that, and it’ll eventually even out.


(Megan ) #10

Hi! I have had a very similar situation to your own. I had an uneven period all through adolescence, lactation that my doctor told me was from over stimulation (helpful doc, thanks), and crazy fluctuations in weight/mood/body hair.

Found out last year at 25 that I have a prolactinoma (mystery solved) after not having a period for a year.

Before discovering the prolactinoma I had tried keto for a month or so. I’m looking into diets that help normalize hormone levels because cabergoline really only seems to be helping with the prolactin when the whole damn system seems offline.

I’m wondering if you’ve had any success since last posting?


#11

I was diagnosed with a prolacinoma about 15 years ago. Since then I have had the surgery to remove it and I go back for regular scans to make sure everything is clear and it is. My prolactin is still high and still I experience discharge. I was on cabergoline that helped a bit, I tried bromoctiptine, that was garbage. So far the only thing I’ve noticed that really has helped is smoking cigarettes. Not an ideal solution. About a month ago I decided I wanted to try the ketogenic diet. I also started taking my vitamins again and added zinc and vitamin e. I have noticed the discharge at this point seems a lot better! I should also note that currently I am not on any medication besides birth control. Since neither where completely working for me my doctor wanted to try taking me off to see what would happen. What happened was the discharge got worse. I go back to see him in April. I am wondering if anyone with high prolactin has had luck on the keto diet? I have also noticed that even on the birth control pills my period has arrived early by a week twice in a row. The discharge does seem a lot better though, like I am comfortable. If anyone has experienced breast discharge I’m sure you know what uncomfortable feels like. I don’t know if it’s better because of the keto diet or taking zinc and vitamin e. I started it all at the same time.


(Nicole Swift) #12

Omg girl I FEEL :clap:t2: YOU :clap:t2: . Keto made my prolactinoma issue 1,000 times worse. So started with leaky boobs. Kept those. Then I went from having a normal period every month to having it for 14 days a month with spotting lasting up to 21 days.

Keto is the only thing that I changed, and I got this weird period the same month. It lasted A YEAR, even months after getting off of the diet.

So I basically had my period randomly for a year. Gyno couldn’t find anything other than slightly high prolactin and slightly low but in range estrogen. No cysts or anything. Just the f*ckery that is keto messing with my hormones.


(Liz Ellen) #13

Prolactinoma on board here, two months into keto. I have dropped at least 20 pounds, probably a little more (I didn’t weigh in the beginning.) I’m now 25 pounds to being overweight. Who-hoo!

I have noticed my periods have gone even more bananas than usual. Lots of cramping, very sore breasts before a cycle. Then a longer period of bleeding, and cycle keeps changing its timing. I will do labs in April and check my prolactin levels, so fingers crossed. Currently take low dose cabergoline.

I am planning to keto on as this is has been far and away the most effective and easiest WOE I have encountered.